%PDF-1.3 1 0 obj << /Type /Catalog /Outlines 2 0 R /Pages 3 0 R >> endobj 2 0 obj << /Type /Outlines /Count 0 >> endobj 3 0 obj << /Type /Pages /Kids [6 0 R 254 0 R 305 0 R 307 0 R 309 0 R 311 0 R 313 0 R 381 0 R 389 0 R 433 0 R 477 0 R 507 0 R 509 0 R ] /Count 13 /Resources << /ProcSet 4 0 R /Font << /F1 8 0 R /F2 9 0 R /F3 10 0 R /F4 11 0 R /F5 256 0 R >> /XObject << /I1 12 0 R /I2 13 0 R /I3 393 0 R /I4 394 0 R /I5 397 0 R /I6 398 0 R /I7 401 0 R /I8 402 0 R /I9 405 0 R /I10 406 0 R /I11 409 0 R /I12 410 0 R /I13 413 0 R /I14 414 0 R /I15 417 0 R /I16 418 0 R /I17 421 0 R /I18 422 0 R /I19 425 0 R /I20 426 0 R /I21 427 0 R /I22 428 0 R /I23 429 0 R /I24 430 0 R /I25 431 0 R /I26 432 0 R /I27 437 0 R /I28 438 0 R /I29 441 0 R /I30 442 0 R /I31 445 0 R /I32 446 0 R /I33 449 0 R /I34 450 0 R /I35 453 0 R /I36 454 0 R /I37 457 0 R /I38 458 0 R /I39 461 0 R /I40 462 0 R /I41 465 0 R /I42 466 0 R /I43 469 0 R /I44 470 0 R /I45 471 0 R /I46 472 0 R /I47 473 0 R /I48 474 0 R /I49 475 0 R /I50 476 0 R /I51 481 0 R /I52 482 0 R /I53 485 0 R /I54 486 0 R /I55 489 0 R /I56 490 0 R /I57 493 0 R /I58 494 0 R /I59 497 0 R /I60 498 0 R /I61 501 0 R /I62 502 0 R /I63 503 0 R /I64 504 0 R /I65 505 0 R /I66 506 0 R >> >> /MediaBox [0.000 0.000 612.000 792.000] >> endobj 4 0 obj [/PDF /Text /ImageC ] endobj 5 0 obj << /Creator (DOMPDF) /CreationDate (D:20170829204105+00'00') /ModDate (D:20170829204105+00'00') /Title (Clinic-Based Infant Screening for Duchenne Muscular Dystrophy: A Feasibility Study PLOS Currents Muscular Dystrophy) >> endobj 6 0 obj << /Type /Page /Parent 3 0 R /Annots [ 14 0 R 16 0 R 18 0 R 20 0 R 22 0 R 24 0 R 26 0 R 28 0 R 30 0 R 32 0 R 34 0 R 36 0 R 38 0 R 40 0 R 42 0 R 44 0 R 46 0 R 48 0 R 50 0 R 52 0 R 54 0 R 56 0 R 58 0 R 60 0 R 62 0 R 64 0 R 66 0 R 68 0 R 70 0 R 72 0 R 74 0 R 76 0 R 78 0 R 80 0 R 82 0 R 84 0 R 86 0 R 88 0 R 90 0 R 92 0 R 94 0 R 96 0 R 98 0 R 100 0 R 102 0 R 104 0 R 106 0 R 108 0 R 110 0 R 112 0 R 114 0 R 116 0 R 118 0 R 120 0 R 122 0 R 124 0 R 126 0 R 128 0 R 130 0 R 132 0 R 134 0 R 136 0 R 138 0 R 140 0 R 142 0 R 144 0 R 146 0 R 148 0 R 150 0 R 152 0 R 154 0 R 156 0 R 158 0 R 160 0 R 162 0 R 164 0 R 166 0 R 168 0 R 170 0 R 172 0 R 174 0 R 176 0 R 178 0 R 180 0 R 182 0 R 184 0 R 186 0 R 188 0 R 190 0 R 192 0 R 194 0 R 196 0 R 198 0 R 200 0 R 202 0 R 204 0 R 206 0 R 208 0 R 210 0 R 212 0 R 214 0 R 216 0 R 218 0 R 220 0 R 222 0 R 224 0 R 226 0 R 228 0 R 230 0 R 232 0 R 234 0 R 236 0 R 238 0 R 240 0 R 242 0 R 244 0 R 246 0 R 248 0 R 250 0 R 252 0 R ] /Contents 7 0 R >> endobj 7 0 obj << /Length 30305 >> stream q 375.000 0 0 39.000 222.000 738.000 cm /I2 Do Q q 15.000 684.354 577.500 53.646 re W n 0.267 0.267 0.267 rg BT 15.000 718.042 Td /F2 21.0 Tf [(Clinic-Based Infant Screening for Duchenne Muscular )] TJ ET BT 15.000 693.094 Td /F2 21.0 Tf [(Dystrophy: A Feasibility Study)] TJ ET Q 0.271 0.267 0.267 rg BT 15.000 675.088 Td /F3 9.8 Tf [(May 2, 2012)] TJ ET BT 68.888 675.088 Td /F3 9.8 Tf [()] TJ ET 0.267 0.267 0.267 rg BT 73.763 675.088 Td /F3 9.8 Tf [(Epidemiology and Patient Registries)] TJ ET BT 26.250 663.247 Td /F1 9.8 Tf [(Alissa Cyrus)] TJ ET 0.271 0.267 0.267 rg BT 80.421 663.247 Td /F1 9.8 Tf [(, )] TJ ET 0.267 0.267 0.267 rg BT 85.842 663.247 Td /F1 9.8 Tf [(Natalie Street)] TJ ET 0.271 0.267 0.267 rg BT 144.907 663.247 Td /F1 9.8 Tf [(, )] TJ ET 0.267 0.267 0.267 rg BT 150.329 663.247 Td /F1 9.8 Tf [(Sharon Quary)] TJ ET 0.271 0.267 0.267 rg BT 211.022 663.247 Td /F1 9.8 Tf [(, )] TJ ET 0.267 0.267 0.267 rg BT 216.443 663.247 Td /F1 9.8 Tf [(Julie Kable)] TJ ET 0.271 0.267 0.267 rg BT 264.130 663.247 Td /F1 9.8 Tf [(, )] TJ ET 0.267 0.267 0.267 rg BT 269.552 663.247 Td /F1 9.8 Tf [(Aileen Kenneson)] TJ ET 0.271 0.267 0.267 rg BT 343.262 663.247 Td /F1 9.8 Tf [(, )] TJ ET 0.267 0.267 0.267 rg BT 348.683 663.247 Td /F1 9.8 Tf [(Paul Fernhoff)] TJ ET 0.271 0.267 0.267 rg BT 26.250 651.342 Td /F1 9.8 Tf [(Cyrus A, Street N, Quary S, Kable J, Kenneson A, Fernhoff P. Clinic-Based Infant Screening for Duchenne Muscular )] TJ ET BT 530.764 651.342 Td /F1 9.8 Tf [(Dystrophy: )] TJ ET BT 26.250 639.438 Td /F1 9.8 Tf [(A Feasibility Study. PLOS Currents Muscular Dystrophy. 2012 May 2 . Edition 1. doi: 10.1371/4f99c5654147a.)] TJ ET q 15.000 28.220 577.500 608.837 re W n 0.271 0.267 0.267 rg BT 26.250 610.335 Td /F4 12.0 Tf [(Abstract)] TJ ET BT 26.250 590.381 Td /F1 9.8 Tf [(Purpose. The purpose of this study was to assess the desirability of Duchenne muscular dystrophy \(DMD\) screening, the )] TJ ET BT 26.250 578.476 Td /F1 9.8 Tf [(effectiveness of the consent process, and the feasibility of conducting DMD screening in a pediatric office.)] TJ ET BT 26.250 559.071 Td /F1 9.8 Tf [(Methods. Infant males who attended a 12-month routine well-child visit at a participating pediatric clinic were screened for DMD. )] TJ ET BT 26.250 547.167 Td /F1 9.8 Tf [(Parents and providers completed post-screening questionnaires to assess their experiences with and attitudes toward )] TJ ET BT 26.250 535.262 Td /F1 9.8 Tf [(screening.)] TJ ET BT 26.250 515.857 Td /F1 9.8 Tf [(Results. A total of 264 male infants were screened for DMD. Approximately 78% of parents indicated support of voluntary DMD )] TJ ET BT 26.250 503.952 Td /F1 9.8 Tf [(screening and 91% of providers were in favor of screening for DMD. About 75% of parents correctly answered three of five )] TJ ET BT 26.250 492.048 Td /F1 9.8 Tf [(questions testing their knowledge of DMD screening.)] TJ ET BT 26.250 472.643 Td /F1 9.8 Tf [(Conclusion. DMD screening is feasible in a pediatric office when conducted as part of a research study. Infant screening for )] TJ ET BT 26.250 460.738 Td /F1 9.8 Tf [(DMD eventually could be offered in pediatric health care provider offices as an optional public health service outside of newborn )] TJ ET BT 26.250 448.833 Td /F1 9.8 Tf [(screening.)] TJ ET BT 26.250 412.231 Td /F4 12.0 Tf [(Funding Statement)] TJ ET BT 26.250 392.277 Td /F1 9.8 Tf [(This study was supported by a cooperative agreement from the Centers for Disease Control and Prevention \(5U50-DD000029\).)] TJ ET BT 26.250 363.174 Td /F4 12.0 Tf [(Introduction)] TJ ET BT 26.250 343.220 Td /F1 9.8 Tf [(Duchenne muscular dystrophy \(DMD\) is the most common childhood muscular dystrophy \(OMIM #310200\). Birth prevalence of )] TJ ET BT 26.250 331.315 Td /F1 9.8 Tf [(DMD ranges from about 1 in 3,900 to 1 in 6,000 live male births)] TJ ET 0.267 0.267 0.267 rg BT 299.913 332.822 Td /F4 8.7 Tf [(1)] TJ ET BT 304.732 332.822 Td /F4 8.7 Tf [(2)] TJ ET 0.271 0.267 0.267 rg BT 309.550 331.315 Td /F1 9.8 Tf [(. DMD is an X-linked condition that affects males primarily and )] TJ ET BT 26.250 319.410 Td /F1 9.8 Tf [(might or might not occur in the presence of a family history)] TJ ET 0.267 0.267 0.267 rg BT 278.765 320.918 Td /F4 8.7 Tf [(3)] TJ ET 0.271 0.267 0.267 rg BT 283.584 319.410 Td /F1 9.8 Tf [(. Signs of DMD often appear before a child is 3 years of age and )] TJ ET BT 26.250 307.506 Td /F1 9.8 Tf [(include gross motor delay, muscle weakness, and difficulty walking and running)] TJ ET 0.267 0.267 0.267 rg BT 368.719 309.013 Td /F4 8.7 Tf [(4)] TJ ET 0.271 0.267 0.267 rg BT 373.537 307.506 Td /F1 9.8 Tf [(. Delays in diagnosis of DMD are well-)] TJ ET BT 26.250 295.601 Td /F1 9.8 Tf [(documented)] TJ ET 0.267 0.267 0.267 rg BT 79.904 297.108 Td /F4 8.7 Tf [(4)] TJ ET BT 84.723 297.108 Td /F4 8.7 Tf [(5)] TJ ET BT 89.542 297.108 Td /F4 8.7 Tf [(6)] TJ ET BT 94.360 297.108 Td /F4 8.7 Tf [(7)] TJ ET 0.271 0.267 0.267 rg BT 99.179 295.601 Td /F1 9.8 Tf [(. A delay of more than 2 years between symptom onset and diagnosis is common because early signs are )] TJ ET BT 26.250 283.696 Td /F1 9.8 Tf [(variable and nonspecific to DMD)] TJ ET 0.267 0.267 0.267 rg BT 166.591 285.203 Td /F4 8.7 Tf [(4)] TJ ET 0.271 0.267 0.267 rg BT 171.410 283.696 Td /F1 9.8 Tf [(. Despite advances in treatment and diagnostic testing, the average age of diagnosis is 5 )] TJ ET BT 26.250 271.791 Td /F1 9.8 Tf [(years and has not changed in the past two decades)] TJ ET 0.267 0.267 0.267 rg BT 249.008 273.299 Td /F4 8.7 Tf [(4)] TJ ET 0.271 0.267 0.267 rg BT 253.827 271.791 Td /F1 9.8 Tf [(.)] TJ ET BT 26.250 252.387 Td /F1 9.8 Tf [(Obtaining an earlier diagnosis of DMD has several benefits to an affected child and his family. Some of these benefits are: \(1\) )] TJ ET BT 26.250 240.482 Td /F1 9.8 Tf [(decreasing the cost and stress associated with numerous visits to health care providers in establishing a diagnosis \(known as )] TJ ET BT 26.250 228.577 Td /F1 9.8 Tf [(the diagnostic odyssey\); \(2\) enabling affected children to have earlier access to supportive therapies and services; \(3\) allowing )] TJ ET BT 26.250 216.672 Td /F1 9.8 Tf [(parents to prepare for having a child with a disability; and \(4\) providing reproductive knowledge to parents and other family )] TJ ET BT 26.250 204.768 Td /F1 9.8 Tf [(members soon after the birth of an affected child)] TJ ET 0.267 0.267 0.267 rg BT 235.436 206.275 Td /F4 8.7 Tf [(1)] TJ ET BT 240.255 206.275 Td /F4 8.7 Tf [(8)] TJ ET BT 245.074 206.275 Td /F4 8.7 Tf [(9)] TJ ET 0.271 0.267 0.267 rg BT 249.892 204.768 Td /F1 9.8 Tf [(. In the 1970s, early diagnosis became possible through detection of )] TJ ET BT 26.250 192.863 Td /F1 9.8 Tf [(elevated creatine kinase \(CK\) in dried blood spots)] TJ ET 0.267 0.267 0.267 rg BT 241.384 194.370 Td /F4 8.7 Tf [(10)] TJ ET 0.271 0.267 0.267 rg BT 251.021 192.863 Td /F1 9.8 Tf [(. Since then, several DMD screening pilot studies and programs have )] TJ ET BT 26.250 180.958 Td /F1 9.8 Tf [(occurred worldwide)] TJ ET 0.267 0.267 0.267 rg BT 110.227 182.465 Td /F4 8.7 Tf [(1)] TJ ET BT 115.045 182.465 Td /F4 8.7 Tf [(2)] TJ ET BT 119.864 182.465 Td /F4 8.7 Tf [(8)] TJ ET BT 124.683 182.465 Td /F4 8.7 Tf [(10)] TJ ET BT 134.320 182.465 Td /F4 8.7 Tf [(11)] TJ ET BT 143.957 182.465 Td /F4 8.7 Tf [(12)] TJ ET BT 153.595 182.465 Td /F4 8.7 Tf [(13)] TJ ET BT 163.232 182.465 Td /F4 8.7 Tf [(14)] TJ ET BT 172.869 182.465 Td /F4 8.7 Tf [(15)] TJ ET BT 182.507 182.465 Td /F4 8.7 Tf [(16)] TJ ET 0.271 0.267 0.267 rg BT 192.144 180.958 Td /F1 9.8 Tf [(. Currently, DMD newborn screening is only being conducted in Antwerp \(Franois )] TJ ET BT 26.250 169.053 Td /F1 9.8 Tf [(Eyskens, personal communication, November 7, 2011\).)] TJ ET BT 26.250 149.649 Td /F1 9.8 Tf [(Although newborn screening for DMD has clear benefits, it has not been adopted more widely because DMD does not meet )] TJ ET BT 26.250 137.744 Td /F1 9.8 Tf [(certain criteria used to determine which conditions become part of traditional newborn screening programs)] TJ ET 0.267 0.267 0.267 rg BT 484.139 139.251 Td /F4 8.7 Tf [(17)] TJ ET 0.271 0.267 0.267 rg BT 493.777 137.744 Td /F1 9.8 Tf [(. In particular, DMD )] TJ ET BT 26.250 125.839 Td /F1 9.8 Tf [(does not have an accepted medical treatment that prevents or reverses disease manifestations. Although experts recommend )] TJ ET BT 26.250 113.934 Td /F1 9.8 Tf [(supportive therapies for DMD that slow progression and increase well-being, little evidence is available to suggest earlier )] TJ ET BT 26.250 102.030 Td /F1 9.8 Tf [(access to these therapies?particularly those started in the newborn period?improves clinical outcomes)] TJ ET 0.267 0.267 0.267 rg BT 466.804 103.537 Td /F4 8.7 Tf [(18)] TJ ET BT 476.441 103.537 Td /F4 8.7 Tf [(19)] TJ ET BT 486.078 103.537 Td /F4 8.7 Tf [(20)] TJ ET BT 495.716 103.537 Td /F4 8.7 Tf [(21)] TJ ET BT 505.353 103.537 Td /F4 8.7 Tf [(22)] TJ ET 0.271 0.267 0.267 rg BT 514.990 102.030 Td /F1 9.8 Tf [(. Given the )] TJ ET BT 26.250 90.125 Td /F1 9.8 Tf [(lack of early, definitive treatment, some parents might not want to know if their newborn has DMD. As a result, DMD newborn )] TJ ET BT 26.250 78.220 Td /F1 9.8 Tf [(screening programs typically have been voluntary and have focused primarily on benefits of early diagnosis to the family. Even )] TJ ET BT 26.250 66.315 Td /F1 9.8 Tf [(so, ethicists have asked whether parents can be informed adequately about the risks and benefits of screening for DMD when )] TJ ET BT 26.250 54.411 Td /F1 9.8 Tf [(receiving information during the busy newborn period)] TJ ET 0.267 0.267 0.267 rg BT 255.472 55.918 Td /F4 8.7 Tf [(23)] TJ ET 0.271 0.267 0.267 rg BT 265.110 54.411 Td /F1 9.8 Tf [(. Additional concerns have been raised about the potential for disrupting )] TJ ET BT 26.250 42.506 Td /F1 9.8 Tf [(parentnewborn bonding upon receiving a presymptomatic diagnosis of a fatal disorder and the burden for parents receiving )] TJ ET Q q 15.000 684.354 577.500 53.646 re W n 0.267 0.267 0.267 rg BT 15.000 718.042 Td /F2 21.0 Tf [(Clinic-Based Infant Screening for Duchenne Muscular )] TJ ET BT 15.000 693.094 Td /F2 21.0 Tf [(Dystrophy: A Feasibility Study)] TJ ET Q 0.271 0.267 0.267 rg BT 15.000 675.088 Td /F3 9.8 Tf [(May 2, 2012)] TJ ET BT 68.888 675.088 Td /F3 9.8 Tf [()] TJ ET 0.267 0.267 0.267 rg BT 73.763 675.088 Td /F3 9.8 Tf [(Epidemiology and Patient Registries)] TJ ET BT 26.250 663.247 Td /F1 9.8 Tf [(Alissa Cyrus)] TJ ET 0.271 0.267 0.267 rg BT 80.421 663.247 Td /F1 9.8 Tf [(, )] TJ ET 0.267 0.267 0.267 rg BT 85.842 663.247 Td /F1 9.8 Tf [(Natalie Street)] TJ ET 0.271 0.267 0.267 rg BT 144.907 663.247 Td /F1 9.8 Tf [(, )] TJ ET 0.267 0.267 0.267 rg BT 150.329 663.247 Td /F1 9.8 Tf [(Sharon Quary)] TJ ET 0.271 0.267 0.267 rg BT 211.022 663.247 Td /F1 9.8 Tf [(, )] TJ ET 0.267 0.267 0.267 rg BT 216.443 663.247 Td /F1 9.8 Tf [(Julie Kable)] TJ ET 0.271 0.267 0.267 rg BT 264.130 663.247 Td /F1 9.8 Tf [(, )] TJ ET 0.267 0.267 0.267 rg BT 269.552 663.247 Td /F1 9.8 Tf [(Aileen Kenneson)] TJ ET 0.271 0.267 0.267 rg BT 343.262 663.247 Td /F1 9.8 Tf [(, )] TJ ET 0.267 0.267 0.267 rg BT 348.683 663.247 Td /F1 9.8 Tf [(Paul Fernhoff)] TJ ET 0.271 0.267 0.267 rg BT 26.250 651.342 Td /F1 9.8 Tf [(Cyrus A, Street N, Quary S, Kable J, Kenneson A, Fernhoff P. Clinic-Based Infant Screening for Duchenne Muscular )] TJ ET BT 530.764 651.342 Td /F1 9.8 Tf [(Dystrophy: )] TJ ET BT 26.250 639.438 Td /F1 9.8 Tf [(A Feasibility Study. PLOS Currents Muscular Dystrophy. 2012 May 2 . Edition 1. doi: 10.1371/4f99c5654147a.)] TJ ET q 15.000 28.220 577.500 608.837 re W n 0.271 0.267 0.267 rg BT 26.250 610.335 Td /F4 12.0 Tf [(Abstract)] TJ ET BT 26.250 590.381 Td /F1 9.8 Tf [(Purpose. The purpose of this study was to assess the desirability of Duchenne muscular dystrophy \(DMD\) screening, the )] TJ ET BT 26.250 578.476 Td /F1 9.8 Tf [(effectiveness of the consent process, and the feasibility of conducting DMD screening in a pediatric office.)] TJ ET BT 26.250 559.071 Td /F1 9.8 Tf [(Methods. Infant males who attended a 12-month routine well-child visit at a participating pediatric clinic were screened for DMD. )] TJ ET BT 26.250 547.167 Td /F1 9.8 Tf [(Parents and providers completed post-screening questionnaires to assess their experiences with and attitudes toward )] TJ ET BT 26.250 535.262 Td /F1 9.8 Tf [(screening.)] TJ ET BT 26.250 515.857 Td /F1 9.8 Tf [(Results. A total of 264 male infants were screened for DMD. Approximately 78% of parents indicated support of voluntary DMD )] TJ ET BT 26.250 503.952 Td /F1 9.8 Tf [(screening and 91% of providers were in favor of screening for DMD. About 75% of parents correctly answered three of five )] TJ ET BT 26.250 492.048 Td /F1 9.8 Tf [(questions testing their knowledge of DMD screening.)] TJ ET BT 26.250 472.643 Td /F1 9.8 Tf [(Conclusion. DMD screening is feasible in a pediatric office when conducted as part of a research study. Infant screening for )] TJ ET BT 26.250 460.738 Td /F1 9.8 Tf [(DMD eventually could be offered in pediatric health care provider offices as an optional public health service outside of newborn )] TJ ET BT 26.250 448.833 Td /F1 9.8 Tf [(screening.)] TJ ET BT 26.250 412.231 Td /F4 12.0 Tf [(Funding Statement)] TJ ET BT 26.250 392.277 Td /F1 9.8 Tf [(This study was supported by a cooperative agreement from the Centers for Disease Control and Prevention \(5U50-DD000029\).)] TJ ET BT 26.250 363.174 Td /F4 12.0 Tf [(Introduction)] TJ ET BT 26.250 343.220 Td /F1 9.8 Tf [(Duchenne muscular dystrophy \(DMD\) is the most common childhood muscular dystrophy \(OMIM #310200\). Birth prevalence of )] TJ ET BT 26.250 331.315 Td /F1 9.8 Tf [(DMD ranges from about 1 in 3,900 to 1 in 6,000 live male births)] TJ ET 0.267 0.267 0.267 rg BT 299.913 332.822 Td /F4 8.7 Tf [(1)] TJ ET BT 304.732 332.822 Td /F4 8.7 Tf [(2)] TJ ET 0.271 0.267 0.267 rg BT 309.550 331.315 Td /F1 9.8 Tf [(. DMD is an X-linked condition that affects males primarily and )] TJ ET BT 26.250 319.410 Td /F1 9.8 Tf [(might or might not occur in the presence of a family history)] TJ ET 0.267 0.267 0.267 rg BT 278.765 320.918 Td /F4 8.7 Tf [(3)] TJ ET 0.271 0.267 0.267 rg BT 283.584 319.410 Td /F1 9.8 Tf [(. Signs of DMD often appear before a child is 3 years of age and )] TJ ET BT 26.250 307.506 Td /F1 9.8 Tf [(include gross motor delay, muscle weakness, and difficulty walking and running)] TJ ET 0.267 0.267 0.267 rg BT 368.719 309.013 Td /F4 8.7 Tf [(4)] TJ ET 0.271 0.267 0.267 rg BT 373.537 307.506 Td /F1 9.8 Tf [(. Delays in diagnosis of DMD are well-)] TJ ET BT 26.250 295.601 Td /F1 9.8 Tf [(documented)] TJ ET 0.267 0.267 0.267 rg BT 79.904 297.108 Td /F4 8.7 Tf [(4)] TJ ET BT 84.723 297.108 Td /F4 8.7 Tf [(5)] TJ ET BT 89.542 297.108 Td /F4 8.7 Tf [(6)] TJ ET BT 94.360 297.108 Td /F4 8.7 Tf [(7)] TJ ET 0.271 0.267 0.267 rg BT 99.179 295.601 Td /F1 9.8 Tf [(. A delay of more than 2 years between symptom onset and diagnosis is common because early signs are )] TJ ET BT 26.250 283.696 Td /F1 9.8 Tf [(variable and nonspecific to DMD)] TJ ET 0.267 0.267 0.267 rg BT 166.591 285.203 Td /F4 8.7 Tf [(4)] TJ ET 0.271 0.267 0.267 rg BT 171.410 283.696 Td /F1 9.8 Tf [(. Despite advances in treatment and diagnostic testing, the average age of diagnosis is 5 )] TJ ET BT 26.250 271.791 Td /F1 9.8 Tf [(years and has not changed in the past two decades)] TJ ET 0.267 0.267 0.267 rg BT 249.008 273.299 Td /F4 8.7 Tf [(4)] TJ ET 0.271 0.267 0.267 rg BT 253.827 271.791 Td /F1 9.8 Tf [(.)] TJ ET BT 26.250 252.387 Td /F1 9.8 Tf [(Obtaining an earlier diagnosis of DMD has several benefits to an affected child and his family. Some of these benefits are: \(1\) )] TJ ET BT 26.250 240.482 Td /F1 9.8 Tf [(decreasing the cost and stress associated with numerous visits to health care providers in establishing a diagnosis \(known as )] TJ ET BT 26.250 228.577 Td /F1 9.8 Tf [(the diagnostic odyssey\); \(2\) enabling affected children to have earlier access to supportive therapies and services; \(3\) allowing )] TJ ET BT 26.250 216.672 Td /F1 9.8 Tf [(parents to prepare for having a child with a disability; and \(4\) providing reproductive knowledge to parents and other family )] TJ ET BT 26.250 204.768 Td /F1 9.8 Tf [(members soon after the birth of an affected child)] TJ ET 0.267 0.267 0.267 rg BT 235.436 206.275 Td /F4 8.7 Tf [(1)] TJ ET BT 240.255 206.275 Td /F4 8.7 Tf [(8)] TJ ET BT 245.074 206.275 Td /F4 8.7 Tf [(9)] TJ ET 0.271 0.267 0.267 rg BT 249.892 204.768 Td /F1 9.8 Tf [(. In the 1970s, early diagnosis became possible through detection of )] TJ ET BT 26.250 192.863 Td /F1 9.8 Tf [(elevated creatine kinase \(CK\) in dried blood spots)] TJ ET 0.267 0.267 0.267 rg BT 241.384 194.370 Td /F4 8.7 Tf [(10)] TJ ET 0.271 0.267 0.267 rg BT 251.021 192.863 Td /F1 9.8 Tf [(. Since then, several DMD screening pilot studies and programs have )] TJ ET BT 26.250 180.958 Td /F1 9.8 Tf [(occurred worldwide)] TJ ET 0.267 0.267 0.267 rg BT 110.227 182.465 Td /F4 8.7 Tf [(1)] TJ ET BT 115.045 182.465 Td /F4 8.7 Tf [(2)] TJ ET BT 119.864 182.465 Td /F4 8.7 Tf [(8)] TJ ET BT 124.683 182.465 Td /F4 8.7 Tf [(10)] TJ ET BT 134.320 182.465 Td /F4 8.7 Tf [(11)] TJ ET BT 143.957 182.465 Td /F4 8.7 Tf [(12)] TJ ET BT 153.595 182.465 Td /F4 8.7 Tf [(13)] TJ ET BT 163.232 182.465 Td /F4 8.7 Tf [(14)] TJ ET BT 172.869 182.465 Td /F4 8.7 Tf [(15)] TJ ET BT 182.507 182.465 Td /F4 8.7 Tf [(16)] TJ ET 0.271 0.267 0.267 rg BT 192.144 180.958 Td /F1 9.8 Tf [(. Currently, DMD newborn screening is only being conducted in Antwerp \(Franois )] TJ ET BT 26.250 169.053 Td /F1 9.8 Tf [(Eyskens, personal communication, November 7, 2011\).)] TJ ET BT 26.250 149.649 Td /F1 9.8 Tf [(Although newborn screening for DMD has clear benefits, it has not been adopted more widely because DMD does not meet )] TJ ET BT 26.250 137.744 Td /F1 9.8 Tf [(certain criteria used to determine which conditions become part of traditional newborn screening programs)] TJ ET 0.267 0.267 0.267 rg BT 484.139 139.251 Td /F4 8.7 Tf [(17)] TJ ET 0.271 0.267 0.267 rg BT 493.777 137.744 Td /F1 9.8 Tf [(. In particular, DMD )] TJ ET BT 26.250 125.839 Td /F1 9.8 Tf [(does not have an accepted medical treatment that prevents or reverses disease manifestations. Although experts recommend )] TJ ET BT 26.250 113.934 Td /F1 9.8 Tf [(supportive therapies for DMD that slow progression and increase well-being, little evidence is available to suggest earlier )] TJ ET BT 26.250 102.030 Td /F1 9.8 Tf [(access to these therapies?particularly those started in the newborn period?improves clinical outcomes)] TJ ET 0.267 0.267 0.267 rg BT 466.804 103.537 Td /F4 8.7 Tf [(18)] TJ ET BT 476.441 103.537 Td /F4 8.7 Tf [(19)] TJ ET BT 486.078 103.537 Td /F4 8.7 Tf [(20)] TJ ET BT 495.716 103.537 Td /F4 8.7 Tf [(21)] TJ ET BT 505.353 103.537 Td /F4 8.7 Tf [(22)] TJ ET 0.271 0.267 0.267 rg BT 514.990 102.030 Td /F1 9.8 Tf [(. Given the )] TJ ET BT 26.250 90.125 Td /F1 9.8 Tf [(lack of early, definitive treatment, some parents might not want to know if their newborn has DMD. As a result, DMD newborn )] TJ ET BT 26.250 78.220 Td /F1 9.8 Tf [(screening programs typically have been voluntary and have focused primarily on benefits of early diagnosis to the family. Even )] TJ ET BT 26.250 66.315 Td /F1 9.8 Tf [(so, ethicists have asked whether parents can be informed adequately about the risks and benefits of screening for DMD when )] TJ ET BT 26.250 54.411 Td /F1 9.8 Tf [(receiving information during the busy newborn period)] TJ ET 0.267 0.267 0.267 rg BT 255.472 55.918 Td /F4 8.7 Tf [(23)] TJ ET 0.271 0.267 0.267 rg BT 265.110 54.411 Td /F1 9.8 Tf [(. Additional concerns have been raised about the potential for disrupting )] TJ ET BT 26.250 42.506 Td /F1 9.8 Tf [(parentnewborn bonding upon receiving a presymptomatic diagnosis of a fatal disorder and the burden for parents receiving )] TJ ET Q q 15.000 684.354 577.500 53.646 re W n 0.267 0.267 0.267 rg BT 15.000 718.042 Td /F2 21.0 Tf [(Clinic-Based Infant Screening for Duchenne Muscular )] TJ ET BT 15.000 693.094 Td /F2 21.0 Tf [(Dystrophy: A Feasibility Study)] TJ ET Q 0.271 0.267 0.267 rg BT 15.000 675.088 Td /F3 9.8 Tf [(May 2, 2012)] TJ ET BT 68.888 675.088 Td /F3 9.8 Tf [()] TJ ET 0.267 0.267 0.267 rg BT 73.763 675.088 Td /F3 9.8 Tf [(Epidemiology and Patient Registries)] TJ ET BT 26.250 663.247 Td /F1 9.8 Tf [(Alissa Cyrus)] TJ ET 0.271 0.267 0.267 rg BT 80.421 663.247 Td /F1 9.8 Tf [(, )] TJ ET 0.267 0.267 0.267 rg BT 85.842 663.247 Td /F1 9.8 Tf [(Natalie Street)] TJ ET 0.271 0.267 0.267 rg BT 144.907 663.247 Td /F1 9.8 Tf [(, )] TJ ET 0.267 0.267 0.267 rg BT 150.329 663.247 Td /F1 9.8 Tf [(Sharon Quary)] TJ ET 0.271 0.267 0.267 rg BT 211.022 663.247 Td /F1 9.8 Tf [(, )] TJ ET 0.267 0.267 0.267 rg BT 216.443 663.247 Td /F1 9.8 Tf [(Julie Kable)] TJ ET 0.271 0.267 0.267 rg BT 264.130 663.247 Td /F1 9.8 Tf [(, )] TJ ET 0.267 0.267 0.267 rg BT 269.552 663.247 Td /F1 9.8 Tf [(Aileen Kenneson)] TJ ET 0.271 0.267 0.267 rg BT 343.262 663.247 Td /F1 9.8 Tf [(, )] TJ ET 0.267 0.267 0.267 rg BT 348.683 663.247 Td /F1 9.8 Tf [(Paul Fernhoff)] TJ ET 0.271 0.267 0.267 rg BT 26.250 651.342 Td /F1 9.8 Tf [(Cyrus A, Street N, Quary S, Kable J, Kenneson A, Fernhoff P. Clinic-Based Infant Screening for Duchenne Muscular )] TJ ET BT 530.764 651.342 Td /F1 9.8 Tf [(Dystrophy: )] TJ ET BT 26.250 639.438 Td /F1 9.8 Tf [(A Feasibility Study. PLOS Currents Muscular Dystrophy. 2012 May 2 . Edition 1. doi: 10.1371/4f99c5654147a.)] TJ ET q 15.000 28.220 577.500 608.837 re W n 0.271 0.267 0.267 rg BT 26.250 610.335 Td /F4 12.0 Tf [(Abstract)] TJ ET BT 26.250 590.381 Td /F1 9.8 Tf [(Purpose. The purpose of this study was to assess the desirability of Duchenne muscular dystrophy \(DMD\) screening, the )] TJ ET BT 26.250 578.476 Td /F1 9.8 Tf [(effectiveness of the consent process, and the feasibility of conducting DMD screening in a pediatric office.)] TJ ET BT 26.250 559.071 Td /F1 9.8 Tf [(Methods. Infant males who attended a 12-month routine well-child visit at a participating pediatric clinic were screened for DMD. )] TJ ET BT 26.250 547.167 Td /F1 9.8 Tf [(Parents and providers completed post-screening questionnaires to assess their experiences with and attitudes toward )] TJ ET BT 26.250 535.262 Td /F1 9.8 Tf [(screening.)] TJ ET BT 26.250 515.857 Td /F1 9.8 Tf [(Results. A total of 264 male infants were screened for DMD. Approximately 78% of parents indicated support of voluntary DMD )] TJ ET BT 26.250 503.952 Td /F1 9.8 Tf [(screening and 91% of providers were in favor of screening for DMD. About 75% of parents correctly answered three of five )] TJ ET BT 26.250 492.048 Td /F1 9.8 Tf [(questions testing their knowledge of DMD screening.)] TJ ET BT 26.250 472.643 Td /F1 9.8 Tf [(Conclusion. DMD screening is feasible in a pediatric office when conducted as part of a research study. Infant screening for )] TJ ET BT 26.250 460.738 Td /F1 9.8 Tf [(DMD eventually could be offered in pediatric health care provider offices as an optional public health service outside of newborn )] TJ ET BT 26.250 448.833 Td /F1 9.8 Tf [(screening.)] TJ ET BT 26.250 412.231 Td /F4 12.0 Tf [(Funding Statement)] TJ ET BT 26.250 392.277 Td /F1 9.8 Tf [(This study was supported by a cooperative agreement from the Centers for Disease Control and Prevention \(5U50-DD000029\).)] TJ ET BT 26.250 363.174 Td /F4 12.0 Tf [(Introduction)] TJ ET BT 26.250 343.220 Td /F1 9.8 Tf [(Duchenne muscular dystrophy \(DMD\) is the most common childhood muscular dystrophy \(OMIM #310200\). Birth prevalence of )] TJ ET BT 26.250 331.315 Td /F1 9.8 Tf [(DMD ranges from about 1 in 3,900 to 1 in 6,000 live male births)] TJ ET 0.267 0.267 0.267 rg BT 299.913 332.822 Td /F4 8.7 Tf [(1)] TJ ET BT 304.732 332.822 Td /F4 8.7 Tf [(2)] TJ ET 0.271 0.267 0.267 rg BT 309.550 331.315 Td /F1 9.8 Tf [(. DMD is an X-linked condition that affects males primarily and )] TJ ET BT 26.250 319.410 Td /F1 9.8 Tf [(might or might not occur in the presence of a family history)] TJ ET 0.267 0.267 0.267 rg BT 278.765 320.918 Td /F4 8.7 Tf [(3)] TJ ET 0.271 0.267 0.267 rg BT 283.584 319.410 Td /F1 9.8 Tf [(. Signs of DMD often appear before a child is 3 years of age and )] TJ ET BT 26.250 307.506 Td /F1 9.8 Tf [(include gross motor delay, muscle weakness, and difficulty walking and running)] TJ ET 0.267 0.267 0.267 rg BT 368.719 309.013 Td /F4 8.7 Tf [(4)] TJ ET 0.271 0.267 0.267 rg BT 373.537 307.506 Td /F1 9.8 Tf [(. Delays in diagnosis of DMD are well-)] TJ ET BT 26.250 295.601 Td /F1 9.8 Tf [(documented)] TJ ET 0.267 0.267 0.267 rg BT 79.904 297.108 Td /F4 8.7 Tf [(4)] TJ ET BT 84.723 297.108 Td /F4 8.7 Tf [(5)] TJ ET BT 89.542 297.108 Td /F4 8.7 Tf [(6)] TJ ET BT 94.360 297.108 Td /F4 8.7 Tf [(7)] TJ ET 0.271 0.267 0.267 rg BT 99.179 295.601 Td /F1 9.8 Tf [(. A delay of more than 2 years between symptom onset and diagnosis is common because early signs are )] TJ ET BT 26.250 283.696 Td /F1 9.8 Tf [(variable and nonspecific to DMD)] TJ ET 0.267 0.267 0.267 rg BT 166.591 285.203 Td /F4 8.7 Tf [(4)] TJ ET 0.271 0.267 0.267 rg BT 171.410 283.696 Td /F1 9.8 Tf [(. Despite advances in treatment and diagnostic testing, the average age of diagnosis is 5 )] TJ ET BT 26.250 271.791 Td /F1 9.8 Tf [(years and has not changed in the past two decades)] TJ ET 0.267 0.267 0.267 rg BT 249.008 273.299 Td /F4 8.7 Tf [(4)] TJ ET 0.271 0.267 0.267 rg BT 253.827 271.791 Td /F1 9.8 Tf [(.)] TJ ET BT 26.250 252.387 Td /F1 9.8 Tf [(Obtaining an earlier diagnosis of DMD has several benefits to an affected child and his family. Some of these benefits are: \(1\) )] TJ ET BT 26.250 240.482 Td /F1 9.8 Tf [(decreasing the cost and stress associated with numerous visits to health care providers in establishing a diagnosis \(known as )] TJ ET BT 26.250 228.577 Td /F1 9.8 Tf [(the diagnostic odyssey\); \(2\) enabling affected children to have earlier access to supportive therapies and services; \(3\) allowing )] TJ ET BT 26.250 216.672 Td /F1 9.8 Tf [(parents to prepare for having a child with a disability; and \(4\) providing reproductive knowledge to parents and other family )] TJ ET BT 26.250 204.768 Td /F1 9.8 Tf [(members soon after the birth of an affected child)] TJ ET 0.267 0.267 0.267 rg BT 235.436 206.275 Td /F4 8.7 Tf [(1)] TJ ET BT 240.255 206.275 Td /F4 8.7 Tf [(8)] TJ ET BT 245.074 206.275 Td /F4 8.7 Tf [(9)] TJ ET 0.271 0.267 0.267 rg BT 249.892 204.768 Td /F1 9.8 Tf [(. In the 1970s, early diagnosis became possible through detection of )] TJ ET BT 26.250 192.863 Td /F1 9.8 Tf [(elevated creatine kinase \(CK\) in dried blood spots)] TJ ET 0.267 0.267 0.267 rg BT 241.384 194.370 Td /F4 8.7 Tf [(10)] TJ ET 0.271 0.267 0.267 rg BT 251.021 192.863 Td /F1 9.8 Tf [(. Since then, several DMD screening pilot studies and programs have )] TJ ET BT 26.250 180.958 Td /F1 9.8 Tf [(occurred worldwide)] TJ ET 0.267 0.267 0.267 rg BT 110.227 182.465 Td /F4 8.7 Tf [(1)] TJ ET BT 115.045 182.465 Td /F4 8.7 Tf [(2)] TJ ET BT 119.864 182.465 Td /F4 8.7 Tf [(8)] TJ ET BT 124.683 182.465 Td /F4 8.7 Tf [(10)] TJ ET BT 134.320 182.465 Td /F4 8.7 Tf [(11)] TJ ET BT 143.957 182.465 Td /F4 8.7 Tf [(12)] TJ ET BT 153.595 182.465 Td /F4 8.7 Tf [(13)] TJ ET BT 163.232 182.465 Td /F4 8.7 Tf [(14)] TJ ET BT 172.869 182.465 Td /F4 8.7 Tf [(15)] TJ ET BT 182.507 182.465 Td /F4 8.7 Tf [(16)] TJ ET 0.271 0.267 0.267 rg BT 192.144 180.958 Td /F1 9.8 Tf [(. Currently, DMD newborn screening is only being conducted in Antwerp \(Franois )] TJ ET BT 26.250 169.053 Td /F1 9.8 Tf [(Eyskens, personal communication, November 7, 2011\).)] TJ ET BT 26.250 149.649 Td /F1 9.8 Tf [(Although newborn screening for DMD has clear benefits, it has not been adopted more widely because DMD does not meet )] TJ ET BT 26.250 137.744 Td /F1 9.8 Tf [(certain criteria used to determine which conditions become part of traditional newborn screening programs)] TJ ET 0.267 0.267 0.267 rg BT 484.139 139.251 Td /F4 8.7 Tf [(17)] TJ ET 0.271 0.267 0.267 rg BT 493.777 137.744 Td /F1 9.8 Tf [(. In particular, DMD )] TJ ET BT 26.250 125.839 Td /F1 9.8 Tf [(does not have an accepted medical treatment that prevents or reverses disease manifestations. Although experts recommend )] TJ ET BT 26.250 113.934 Td /F1 9.8 Tf [(supportive therapies for DMD that slow progression and increase well-being, little evidence is available to suggest earlier )] TJ ET BT 26.250 102.030 Td /F1 9.8 Tf [(access to these therapies?particularly those started in the newborn period?improves clinical outcomes)] TJ ET 0.267 0.267 0.267 rg BT 466.804 103.537 Td /F4 8.7 Tf [(18)] TJ ET BT 476.441 103.537 Td /F4 8.7 Tf [(19)] TJ ET BT 486.078 103.537 Td /F4 8.7 Tf [(20)] TJ ET BT 495.716 103.537 Td /F4 8.7 Tf [(21)] TJ ET BT 505.353 103.537 Td /F4 8.7 Tf [(22)] TJ ET 0.271 0.267 0.267 rg BT 514.990 102.030 Td /F1 9.8 Tf [(. Given the )] TJ ET BT 26.250 90.125 Td /F1 9.8 Tf [(lack of early, definitive treatment, some parents might not want to know if their newborn has DMD. As a result, DMD newborn )] TJ ET BT 26.250 78.220 Td /F1 9.8 Tf [(screening programs typically have been voluntary and have focused primarily on benefits of early diagnosis to the family. Even )] TJ ET BT 26.250 66.315 Td /F1 9.8 Tf [(so, ethicists have asked whether parents can be informed adequately about the risks and benefits of screening for DMD when )] TJ ET BT 26.250 54.411 Td /F1 9.8 Tf [(receiving information during the busy newborn period)] TJ ET 0.267 0.267 0.267 rg BT 255.472 55.918 Td /F4 8.7 Tf [(23)] TJ ET 0.271 0.267 0.267 rg BT 265.110 54.411 Td /F1 9.8 Tf [(. 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] /Contents 255 0 R >> endobj 255 0 obj << /Length 28786 >> stream 0.271 0.267 0.267 rg q 15.000 21.991 577.500 755.009 re W n 0.271 0.267 0.267 rg BT 26.250 767.476 Td /F1 9.8 Tf [(false-positive results)] TJ ET 0.267 0.267 0.267 rg BT 114.566 768.983 Td /F4 8.7 Tf [(24)] TJ ET BT 124.203 768.983 Td /F4 8.7 Tf [(25)] TJ ET 0.271 0.267 0.267 rg BT 133.840 767.476 Td /F1 9.8 Tf [(.)] TJ ET BT 26.250 748.071 Td /F1 9.8 Tf [(Offering DMD screening after the newborn period?but before the onset of symptoms?might address many of the ethical )] TJ ET BT 26.250 736.167 Td /F1 9.8 Tf [(concerns raised about newborn screening, while also realizing the benefits of early detection)] TJ ET 0.267 0.267 0.267 rg BT 424.557 737.674 Td /F4 8.7 Tf [(23)] TJ ET 0.271 0.267 0.267 rg BT 434.194 736.167 Td /F1 9.8 Tf [(. Information could be provided )] TJ ET BT 26.250 724.262 Td /F1 9.8 Tf [(to parents after they have had time to bond with their infant and to consider the potential consequences of receiving positive )] TJ ET BT 26.250 712.357 Td /F1 9.8 Tf [(screening results. Screening could be offered at the age when affected boys would still be presymptomatic and most parents )] TJ ET BT 26.250 700.452 Td /F1 9.8 Tf [(would not have had additional children)] TJ ET 0.267 0.267 0.267 rg BT 192.088 701.960 Td /F4 8.7 Tf [(26)] TJ ET 0.271 0.267 0.267 rg BT 201.725 700.452 Td /F1 9.8 Tf [(.)] TJ ET BT 26.250 681.048 Td /F1 9.8 Tf [(In 2004, the Centers for Disease Control and Prevention \(CDC\) convened a workshop to discuss past and present DMD )] TJ ET BT 26.250 669.143 Td /F1 9.8 Tf [(newborn screening programs, the risks and benefits of screening, and to announce the availability of funding for newborn and )] TJ ET BT 26.250 657.238 Td /F1 9.8 Tf [(older infant DMD screening studies \(http://www.cdc.gov/ncbddd/duchenne/documents/NBS_Lay_Report.pdf\). As a result, two )] TJ ET BT 26.250 645.333 Td /F1 9.8 Tf [(DMD screening studies were conducted: \(1\) a pilot newborn screening study in Ohio)] TJ ET 0.267 0.267 0.267 rg BT 389.311 646.841 Td /F4 8.7 Tf [(27)] TJ ET 0.271 0.267 0.267 rg BT 398.948 645.333 Td /F1 9.8 Tf [(,and \(2\) a pilot infant screening study in )] TJ ET BT 26.250 633.429 Td /F1 9.8 Tf [(metropolitan Atlanta. Here we report results from the infant DMD screening study, in which parents were offered DMD screening )] TJ ET BT 26.250 621.524 Td /F1 9.8 Tf [(for their infant sons at the 12-month pediatric clinic visit. The goals of this study were to determine: \(1\) parental experience with )] TJ ET BT 26.250 609.619 Td /F1 9.8 Tf [(and desirability of DMD screening; \(2\) how well the consent process informed parents; and \(3\) the logistical feasibility of )] TJ ET BT 26.250 597.714 Td /F1 9.8 Tf [(conducting DMD screening in a pediatric office setting.)] TJ ET BT 26.250 561.112 Td /F4 12.0 Tf [(Materials and Methods)] TJ ET BT 26.250 541.158 Td /F1 9.8 Tf [(Study recruitment took place at four metropolitan Atlanta pediatric clinics from February through September 2007. Male infants )] TJ ET BT 26.250 529.253 Td /F1 9.8 Tf [(who attended the 12-month routine well-child visit at one of the participating pediatric clinics were eligible for the study. To avoid )] TJ ET BT 26.250 517.348 Td /F1 9.8 Tf [(the increased risk for false-positive screens, infants were excluded if they were seeing a pediatrician because of illness. Infants )] TJ ET BT 26.250 505.443 Td /F1 9.8 Tf [(with a family history of DMD also were excluded, as these infants and their families would have required a more extensive )] TJ ET BT 26.250 493.539 Td /F1 9.8 Tf [(genetic evaluation.)] TJ ET BT 26.250 474.134 Td /F1 9.8 Tf [(Parents were given a study packet to review that contained an introductory letter, brochure, consent form, Health Insurance )] TJ ET BT 26.250 462.229 Td /F1 9.8 Tf [(Portability and Accountability Act form, and decliner questionnaire. Study staff then discussed the study materials with all )] TJ ET BT 26.250 450.324 Td /F1 9.8 Tf [(parents during the visit, answered questions, and obtained consent. Parents were given the option to have the sample held for 2 )] TJ ET BT 26.250 438.420 Td /F1 9.8 Tf [(weeks while they took additional time to review the study packet. After 2 weeks, study staff called the parent\(s\) for a final )] TJ ET BT 26.250 426.515 Td /F1 9.8 Tf [(decision about participation. A toll-free number and a website were available to parents wanting more information about the )] TJ ET BT 26.250 414.610 Td /F1 9.8 Tf [(study. Parents also were given the option of withdrawing from the study at any time.)] TJ ET BT 26.250 395.205 Td /F1 9.8 Tf [(The screening test used for this study detected total CK in dried blood spots on filter paper)] TJ ET 0.267 0.267 0.267 rg BT 415.363 396.713 Td /F4 8.7 Tf [(28)] TJ ET 0.271 0.267 0.267 rg BT 425.000 395.205 Td /F1 9.8 Tf [(. Sample collection for DMD )] TJ ET BT 26.250 383.301 Td /F1 9.8 Tf [(screening was performed at the 12-month visit. As the American Academy of Pediatrics recommends testing infants 12 months )] TJ ET BT 26.250 371.396 Td /F1 9.8 Tf [(of age for anemia)] TJ ET 0.267 0.267 0.267 rg BT 102.124 372.903 Td /F4 8.7 Tf [(29)] TJ ET 0.271 0.267 0.267 rg BT 111.762 371.396 Td /F1 9.8 Tf [(, this visit was ideal for DMD screening because a sample could be obtained using blood from the same )] TJ ET BT 26.250 359.491 Td /F1 9.8 Tf [(fingerstick. Office staff involvement was limited to performing the fingerstick. Two extra drops of blood were collected on a )] TJ ET BT 26.250 347.586 Td /F1 9.8 Tf [(separate filter paper card to be used for DMD screening. Following blood collection, the card was transported by study staff to )] TJ ET BT 26.250 335.682 Td /F1 9.8 Tf [(the Emory Biochemical Genetics Laboratory where the CK testing was performed.)] TJ ET BT 26.250 316.277 Td /F1 9.8 Tf [(Negative screening test results were mailed to parents approximately 1 to 2 weeks after sample collection. Included in the )] TJ ET BT 26.250 304.372 Td /F1 9.8 Tf [(results packet were a result letter; a post-screening questionnaire; and a preaddressed, postage-paid envelope. Parents were )] TJ ET BT 26.250 292.467 Td /F1 9.8 Tf [(asked to complete the questionnaire and return it in the envelope provided. They also were given the option to complete a )] TJ ET BT 26.250 280.563 Td /F1 9.8 Tf [(questionnaire online. Follow-up telephone calls were made to ensure receipt of study results and to remind parents to complete )] TJ ET BT 26.250 268.658 Td /F1 9.8 Tf [(the questionnaire. A second questionnaire was mailed approximately a month after the results were sent. Parents were asked to )] TJ ET BT 26.250 256.753 Td /F1 9.8 Tf [(complete and return the questionnaires only if they had not previously done so. Parents of twins were instructed to complete )] TJ ET BT 26.250 244.848 Td /F1 9.8 Tf [(only one questionnaire. A protocol to follow-up infants with elevated CK \(positive screening result\) was also developed.)] TJ ET BT 26.250 225.444 Td /F5 9.8 Tf [(Self-Administered Post-Screening Questionnaires)] TJ ET BT 26.250 206.039 Td /F1 9.8 Tf [(Investigators from the newborn and infant screening pilot studies developed questionnaires that assessed the experiences of )] TJ ET BT 26.250 194.134 Td /F1 9.8 Tf [(parents and health care providers. The post-screening questionnaire given to parents whose sons participated in the screening )] TJ ET BT 26.250 182.229 Td /F1 9.8 Tf [(program evaluated: \(1\) overall experience with the screening program; \(2\) the value of the written and verbal study information )] TJ ET BT 26.250 170.325 Td /F1 9.8 Tf [(parents received; \(3\) basic knowledge about DMD and screening; and \(4\) demographic and family history information. The )] TJ ET BT 26.250 158.420 Td /F1 9.8 Tf [(decliner questionnaire evaluated factors that influenced refusal of screening for parents who received information about the )] TJ ET BT 26.250 146.515 Td /F1 9.8 Tf [(study, but declined participation. This questionnaire was included in the study packet. Parents could complete and return it )] TJ ET BT 26.250 134.610 Td /F1 9.8 Tf [(during the appointment or in a preaddressed stamped envelope. The provider questionnaire was designed for providers in )] TJ ET BT 26.250 122.706 Td /F1 9.8 Tf [(participating clinics to assess their attitudes and opinions about DMD screening and its incorporation into their clinical practice. )] TJ ET BT 26.250 110.801 Td /F1 9.8 Tf [(Pediatricians, physician assistants, nurses, nurse practitioners, and medical assistants involved in sample collection were asked )] TJ ET BT 26.250 98.896 Td /F1 9.8 Tf [(to fill out the questionnaire after completion of the study.)] TJ ET BT 26.250 79.491 Td /F5 9.8 Tf [(Statistical Analysis)] TJ ET BT 26.250 60.087 Td /F1 9.8 Tf [(Questionnaire data were encoded using SurveyMonkey \()] TJ ET BT 281.486 60.087 Td /F1 9.8 Tf [(www.surveymonkey.com)] TJ ET BT 389.291 60.087 Td /F1 9.8 Tf [(, LLC, Palo Alto, CA\). Data were verified )] TJ ET BT 26.250 48.182 Td /F1 9.8 Tf [(and then imported into Statistical Package for the Social Sciences \(SPSS\) version 15.0. for analysis)] TJ ET 0.267 0.267 0.267 rg BT 455.981 49.689 Td /F4 8.7 Tf [(30)] TJ ET 0.271 0.267 0.267 rg BT 465.619 48.182 Td /F1 9.8 Tf [(. Descriptive statistics )] TJ ET BT 26.250 36.277 Td /F1 9.8 Tf [(were computed to characterize the responses. To assess differences between groups,)] TJ ET BT 398.544 36.277 Td /F5 9.8 Tf [( t)] TJ ET BT 403.965 36.277 Td /F1 9.8 Tf [( tests for continuous data and chi-)] TJ ET Q q 15.000 21.991 577.500 755.009 re W n 0.271 0.267 0.267 rg BT 26.250 767.476 Td /F1 9.8 Tf [(false-positive results)] TJ ET 0.267 0.267 0.267 rg BT 114.566 768.983 Td /F4 8.7 Tf [(24)] TJ ET BT 124.203 768.983 Td /F4 8.7 Tf [(25)] TJ ET 0.271 0.267 0.267 rg BT 133.840 767.476 Td /F1 9.8 Tf [(.)] TJ ET BT 26.250 748.071 Td /F1 9.8 Tf [(Offering DMD screening after the newborn period?but before the onset of symptoms?might address many of the ethical )] TJ ET BT 26.250 736.167 Td /F1 9.8 Tf [(concerns raised about newborn screening, while also realizing the benefits of early detection)] TJ ET 0.267 0.267 0.267 rg BT 424.557 737.674 Td /F4 8.7 Tf [(23)] TJ ET 0.271 0.267 0.267 rg BT 434.194 736.167 Td /F1 9.8 Tf [(. Information could be provided )] TJ ET BT 26.250 724.262 Td /F1 9.8 Tf [(to parents after they have had time to bond with their infant and to consider the potential consequences of receiving positive )] TJ ET BT 26.250 712.357 Td /F1 9.8 Tf [(screening results. Screening could be offered at the age when affected boys would still be presymptomatic and most parents )] TJ ET BT 26.250 700.452 Td /F1 9.8 Tf [(would not have had additional children)] TJ ET 0.267 0.267 0.267 rg BT 192.088 701.960 Td /F4 8.7 Tf [(26)] TJ ET 0.271 0.267 0.267 rg BT 201.725 700.452 Td /F1 9.8 Tf [(.)] TJ ET BT 26.250 681.048 Td /F1 9.8 Tf [(In 2004, the Centers for Disease Control and Prevention \(CDC\) convened a workshop to discuss past and present DMD )] TJ ET BT 26.250 669.143 Td /F1 9.8 Tf [(newborn screening programs, the risks and benefits of screening, and to announce the availability of funding for newborn and )] TJ ET BT 26.250 657.238 Td /F1 9.8 Tf [(older infant DMD screening studies \(http://www.cdc.gov/ncbddd/duchenne/documents/NBS_Lay_Report.pdf\). As a result, two )] TJ ET BT 26.250 645.333 Td /F1 9.8 Tf [(DMD screening studies were conducted: \(1\) a pilot newborn screening study in Ohio)] TJ ET 0.267 0.267 0.267 rg BT 389.311 646.841 Td /F4 8.7 Tf [(27)] TJ ET 0.271 0.267 0.267 rg BT 398.948 645.333 Td /F1 9.8 Tf [(,and \(2\) a pilot infant screening study in )] TJ ET BT 26.250 633.429 Td /F1 9.8 Tf [(metropolitan Atlanta. Here we report results from the infant DMD screening study, in which parents were offered DMD screening )] TJ ET BT 26.250 621.524 Td /F1 9.8 Tf [(for their infant sons at the 12-month pediatric clinic visit. The goals of this study were to determine: \(1\) parental experience with )] TJ ET BT 26.250 609.619 Td /F1 9.8 Tf [(and desirability of DMD screening; \(2\) how well the consent process informed parents; and \(3\) the logistical feasibility of )] TJ ET BT 26.250 597.714 Td /F1 9.8 Tf [(conducting DMD screening in a pediatric office setting.)] TJ ET BT 26.250 561.112 Td /F4 12.0 Tf [(Materials and Methods)] TJ ET BT 26.250 541.158 Td /F1 9.8 Tf [(Study recruitment took place at four metropolitan Atlanta pediatric clinics from February through September 2007. Male infants )] TJ ET BT 26.250 529.253 Td /F1 9.8 Tf [(who attended the 12-month routine well-child visit at one of the participating pediatric clinics were eligible for the study. To avoid )] TJ ET BT 26.250 517.348 Td /F1 9.8 Tf [(the increased risk for false-positive screens, infants were excluded if they were seeing a pediatrician because of illness. Infants )] TJ ET BT 26.250 505.443 Td /F1 9.8 Tf [(with a family history of DMD also were excluded, as these infants and their families would have required a more extensive )] TJ ET BT 26.250 493.539 Td /F1 9.8 Tf [(genetic evaluation.)] TJ ET BT 26.250 474.134 Td /F1 9.8 Tf [(Parents were given a study packet to review that contained an introductory letter, brochure, consent form, Health Insurance )] TJ ET BT 26.250 462.229 Td /F1 9.8 Tf [(Portability and Accountability Act form, and decliner questionnaire. Study staff then discussed the study materials with all )] TJ ET BT 26.250 450.324 Td /F1 9.8 Tf [(parents during the visit, answered questions, and obtained consent. Parents were given the option to have the sample held for 2 )] TJ ET BT 26.250 438.420 Td /F1 9.8 Tf [(weeks while they took additional time to review the study packet. After 2 weeks, study staff called the parent\(s\) for a final )] TJ ET BT 26.250 426.515 Td /F1 9.8 Tf [(decision about participation. A toll-free number and a website were available to parents wanting more information about the )] TJ ET BT 26.250 414.610 Td /F1 9.8 Tf [(study. Parents also were given the option of withdrawing from the study at any time.)] TJ ET BT 26.250 395.205 Td /F1 9.8 Tf [(The screening test used for this study detected total CK in dried blood spots on filter paper)] TJ ET 0.267 0.267 0.267 rg BT 415.363 396.713 Td /F4 8.7 Tf [(28)] TJ ET 0.271 0.267 0.267 rg BT 425.000 395.205 Td /F1 9.8 Tf [(. Sample collection for DMD )] TJ ET BT 26.250 383.301 Td /F1 9.8 Tf [(screening was performed at the 12-month visit. As the American Academy of Pediatrics recommends testing infants 12 months )] TJ ET BT 26.250 371.396 Td /F1 9.8 Tf [(of age for anemia)] TJ ET 0.267 0.267 0.267 rg BT 102.124 372.903 Td /F4 8.7 Tf [(29)] TJ ET 0.271 0.267 0.267 rg BT 111.762 371.396 Td /F1 9.8 Tf [(, this visit was ideal for DMD screening because a sample could be obtained using blood from the same )] TJ ET BT 26.250 359.491 Td /F1 9.8 Tf [(fingerstick. Office staff involvement was limited to performing the fingerstick. Two extra drops of blood were collected on a )] TJ ET BT 26.250 347.586 Td /F1 9.8 Tf [(separate filter paper card to be used for DMD screening. Following blood collection, the card was transported by study staff to )] TJ ET BT 26.250 335.682 Td /F1 9.8 Tf [(the Emory Biochemical Genetics Laboratory where the CK testing was performed.)] TJ ET BT 26.250 316.277 Td /F1 9.8 Tf [(Negative screening test results were mailed to parents approximately 1 to 2 weeks after sample collection. Included in the )] TJ ET BT 26.250 304.372 Td /F1 9.8 Tf [(results packet were a result letter; a post-screening questionnaire; and a preaddressed, postage-paid envelope. Parents were )] TJ ET BT 26.250 292.467 Td /F1 9.8 Tf [(asked to complete the questionnaire and return it in the envelope provided. They also were given the option to complete a )] TJ ET BT 26.250 280.563 Td /F1 9.8 Tf [(questionnaire online. Follow-up telephone calls were made to ensure receipt of study results and to remind parents to complete )] TJ ET BT 26.250 268.658 Td /F1 9.8 Tf [(the questionnaire. A second questionnaire was mailed approximately a month after the results were sent. Parents were asked to )] TJ ET BT 26.250 256.753 Td /F1 9.8 Tf [(complete and return the questionnaires only if they had not previously done so. Parents of twins were instructed to complete )] TJ ET BT 26.250 244.848 Td /F1 9.8 Tf [(only one questionnaire. A protocol to follow-up infants with elevated CK \(positive screening result\) was also developed.)] TJ ET BT 26.250 225.444 Td /F5 9.8 Tf [(Self-Administered Post-Screening Questionnaires)] TJ ET BT 26.250 206.039 Td /F1 9.8 Tf [(Investigators from the newborn and infant screening pilot studies developed questionnaires that assessed the experiences of )] TJ ET BT 26.250 194.134 Td /F1 9.8 Tf [(parents and health care providers. The post-screening questionnaire given to parents whose sons participated in the screening )] TJ ET BT 26.250 182.229 Td /F1 9.8 Tf [(program evaluated: \(1\) overall experience with the screening program; \(2\) the value of the written and verbal study information )] TJ ET BT 26.250 170.325 Td /F1 9.8 Tf [(parents received; \(3\) basic knowledge about DMD and screening; and \(4\) demographic and family history information. The )] TJ ET BT 26.250 158.420 Td /F1 9.8 Tf [(decliner questionnaire evaluated factors that influenced refusal of screening for parents who received information about the )] TJ ET BT 26.250 146.515 Td /F1 9.8 Tf [(study, but declined participation. This questionnaire was included in the study packet. Parents could complete and return it )] TJ ET BT 26.250 134.610 Td /F1 9.8 Tf [(during the appointment or in a preaddressed stamped envelope. The provider questionnaire was designed for providers in )] TJ ET BT 26.250 122.706 Td /F1 9.8 Tf [(participating clinics to assess their attitudes and opinions about DMD screening and its incorporation into their clinical practice. )] TJ ET BT 26.250 110.801 Td /F1 9.8 Tf [(Pediatricians, physician assistants, nurses, nurse practitioners, and medical assistants involved in sample collection were asked )] TJ ET BT 26.250 98.896 Td /F1 9.8 Tf [(to fill out the questionnaire after completion of the study.)] TJ ET BT 26.250 79.491 Td /F5 9.8 Tf [(Statistical Analysis)] TJ ET BT 26.250 60.087 Td /F1 9.8 Tf [(Questionnaire data were encoded using SurveyMonkey \()] TJ ET BT 281.486 60.087 Td /F1 9.8 Tf [(www.surveymonkey.com)] TJ ET BT 389.291 60.087 Td /F1 9.8 Tf [(, LLC, Palo Alto, CA\). Data were verified )] TJ ET BT 26.250 48.182 Td /F1 9.8 Tf [(and then imported into Statistical Package for the Social Sciences \(SPSS\) version 15.0. for analysis)] TJ ET 0.267 0.267 0.267 rg BT 455.981 49.689 Td /F4 8.7 Tf [(30)] TJ ET 0.271 0.267 0.267 rg BT 465.619 48.182 Td /F1 9.8 Tf [(. Descriptive statistics )] TJ ET BT 26.250 36.277 Td /F1 9.8 Tf [(were computed to characterize the responses. To assess differences between groups,)] TJ ET BT 398.544 36.277 Td /F5 9.8 Tf [( t)] TJ ET BT 403.965 36.277 Td /F1 9.8 Tf [( tests for continuous data and chi-)] TJ ET Q q 15.000 21.991 577.500 755.009 re W n 0.271 0.267 0.267 rg BT 26.250 767.476 Td /F1 9.8 Tf [(false-positive results)] TJ ET 0.267 0.267 0.267 rg BT 114.566 768.983 Td /F4 8.7 Tf [(24)] TJ ET BT 124.203 768.983 Td /F4 8.7 Tf [(25)] TJ ET 0.271 0.267 0.267 rg BT 133.840 767.476 Td /F1 9.8 Tf [(.)] TJ ET BT 26.250 748.071 Td /F1 9.8 Tf [(Offering DMD screening after the newborn period?but before the onset of symptoms?might address many of the ethical )] TJ ET BT 26.250 736.167 Td /F1 9.8 Tf [(concerns raised about newborn screening, while also realizing the benefits of early detection)] TJ ET 0.267 0.267 0.267 rg BT 424.557 737.674 Td /F4 8.7 Tf [(23)] TJ ET 0.271 0.267 0.267 rg BT 434.194 736.167 Td /F1 9.8 Tf [(. Information could be provided )] TJ ET BT 26.250 724.262 Td /F1 9.8 Tf [(to parents after they have had time to bond with their infant and to consider the potential consequences of receiving positive )] TJ ET BT 26.250 712.357 Td /F1 9.8 Tf [(screening results. Screening could be offered at the age when affected boys would still be presymptomatic and most parents )] TJ ET BT 26.250 700.452 Td /F1 9.8 Tf [(would not have had additional children)] TJ ET 0.267 0.267 0.267 rg BT 192.088 701.960 Td /F4 8.7 Tf [(26)] TJ ET 0.271 0.267 0.267 rg BT 201.725 700.452 Td /F1 9.8 Tf [(.)] TJ ET BT 26.250 681.048 Td /F1 9.8 Tf [(In 2004, the Centers for Disease Control and Prevention \(CDC\) convened a workshop to discuss past and present DMD )] TJ ET BT 26.250 669.143 Td /F1 9.8 Tf [(newborn screening programs, the risks and benefits of screening, and to announce the availability of funding for newborn and )] TJ ET BT 26.250 657.238 Td /F1 9.8 Tf [(older infant DMD screening studies \(http://www.cdc.gov/ncbddd/duchenne/documents/NBS_Lay_Report.pdf\). As a result, two )] TJ ET BT 26.250 645.333 Td /F1 9.8 Tf [(DMD screening studies were conducted: \(1\) a pilot newborn screening study in Ohio)] TJ ET 0.267 0.267 0.267 rg BT 389.311 646.841 Td /F4 8.7 Tf [(27)] TJ ET 0.271 0.267 0.267 rg BT 398.948 645.333 Td /F1 9.8 Tf [(,and \(2\) a pilot infant screening study in )] TJ ET BT 26.250 633.429 Td /F1 9.8 Tf [(metropolitan Atlanta. Here we report results from the infant DMD screening study, in which parents were offered DMD screening )] TJ ET BT 26.250 621.524 Td /F1 9.8 Tf [(for their infant sons at the 12-month pediatric clinic visit. The goals of this study were to determine: \(1\) parental experience with )] TJ ET BT 26.250 609.619 Td /F1 9.8 Tf [(and desirability of DMD screening; \(2\) how well the consent process informed parents; and \(3\) the logistical feasibility of )] TJ ET BT 26.250 597.714 Td /F1 9.8 Tf [(conducting DMD screening in a pediatric office setting.)] TJ ET BT 26.250 561.112 Td /F4 12.0 Tf [(Materials and Methods)] TJ ET BT 26.250 541.158 Td /F1 9.8 Tf [(Study recruitment took place at four metropolitan Atlanta pediatric clinics from February through September 2007. Male infants )] TJ ET BT 26.250 529.253 Td /F1 9.8 Tf [(who attended the 12-month routine well-child visit at one of the participating pediatric clinics were eligible for the study. To avoid )] TJ ET BT 26.250 517.348 Td /F1 9.8 Tf [(the increased risk for false-positive screens, infants were excluded if they were seeing a pediatrician because of illness. Infants )] TJ ET BT 26.250 505.443 Td /F1 9.8 Tf [(with a family history of DMD also were excluded, as these infants and their families would have required a more extensive )] TJ ET BT 26.250 493.539 Td /F1 9.8 Tf [(genetic evaluation.)] TJ ET BT 26.250 474.134 Td /F1 9.8 Tf [(Parents were given a study packet to review that contained an introductory letter, brochure, consent form, Health Insurance )] TJ ET BT 26.250 462.229 Td /F1 9.8 Tf [(Portability and Accountability Act form, and decliner questionnaire. Study staff then discussed the study materials with all )] TJ ET BT 26.250 450.324 Td /F1 9.8 Tf [(parents during the visit, answered questions, and obtained consent. Parents were given the option to have the sample held for 2 )] TJ ET BT 26.250 438.420 Td /F1 9.8 Tf [(weeks while they took additional time to review the study packet. After 2 weeks, study staff called the parent\(s\) for a final )] TJ ET BT 26.250 426.515 Td /F1 9.8 Tf [(decision about participation. A toll-free number and a website were available to parents wanting more information about the )] TJ ET BT 26.250 414.610 Td /F1 9.8 Tf [(study. Parents also were given the option of withdrawing from the study at any time.)] TJ ET BT 26.250 395.205 Td /F1 9.8 Tf [(The screening test used for this study detected total CK in dried blood spots on filter paper)] TJ ET 0.267 0.267 0.267 rg BT 415.363 396.713 Td /F4 8.7 Tf [(28)] TJ ET 0.271 0.267 0.267 rg BT 425.000 395.205 Td /F1 9.8 Tf [(. Sample collection for DMD )] TJ ET BT 26.250 383.301 Td /F1 9.8 Tf [(screening was performed at the 12-month visit. As the American Academy of Pediatrics recommends testing infants 12 months )] TJ ET BT 26.250 371.396 Td /F1 9.8 Tf [(of age for anemia)] TJ ET 0.267 0.267 0.267 rg BT 102.124 372.903 Td /F4 8.7 Tf [(29)] TJ ET 0.271 0.267 0.267 rg BT 111.762 371.396 Td /F1 9.8 Tf [(, this visit was ideal for DMD screening because a sample could be obtained using blood from the same )] TJ ET BT 26.250 359.491 Td /F1 9.8 Tf [(fingerstick. Office staff involvement was limited to performing the fingerstick. Two extra drops of blood were collected on a )] TJ ET BT 26.250 347.586 Td /F1 9.8 Tf [(separate filter paper card to be used for DMD screening. Following blood collection, the card was transported by study staff to )] TJ ET BT 26.250 335.682 Td /F1 9.8 Tf [(the Emory Biochemical Genetics Laboratory where the CK testing was performed.)] TJ ET BT 26.250 316.277 Td /F1 9.8 Tf [(Negative screening test results were mailed to parents approximately 1 to 2 weeks after sample collection. Included in the )] TJ ET BT 26.250 304.372 Td /F1 9.8 Tf [(results packet were a result letter; a post-screening questionnaire; and a preaddressed, postage-paid envelope. Parents were )] TJ ET BT 26.250 292.467 Td /F1 9.8 Tf [(asked to complete the questionnaire and return it in the envelope provided. They also were given the option to complete a )] TJ ET BT 26.250 280.563 Td /F1 9.8 Tf [(questionnaire online. Follow-up telephone calls were made to ensure receipt of study results and to remind parents to complete )] TJ ET BT 26.250 268.658 Td /F1 9.8 Tf [(the questionnaire. A second questionnaire was mailed approximately a month after the results were sent. Parents were asked to )] TJ ET BT 26.250 256.753 Td /F1 9.8 Tf [(complete and return the questionnaires only if they had not previously done so. Parents of twins were instructed to complete )] TJ ET BT 26.250 244.848 Td /F1 9.8 Tf [(only one questionnaire. A protocol to follow-up infants with elevated CK \(positive screening result\) was also developed.)] TJ ET BT 26.250 225.444 Td /F5 9.8 Tf [(Self-Administered Post-Screening Questionnaires)] TJ ET BT 26.250 206.039 Td /F1 9.8 Tf [(Investigators from the newborn and infant screening pilot studies developed questionnaires that assessed the experiences of )] TJ ET BT 26.250 194.134 Td /F1 9.8 Tf [(parents and health care providers. The post-screening questionnaire given to parents whose sons participated in the screening )] TJ ET BT 26.250 182.229 Td /F1 9.8 Tf [(program evaluated: \(1\) overall experience with the screening program; \(2\) the value of the written and verbal study information )] TJ ET BT 26.250 170.325 Td /F1 9.8 Tf [(parents received; \(3\) basic knowledge about DMD and screening; and \(4\) demographic and family history information. The )] TJ ET BT 26.250 158.420 Td /F1 9.8 Tf [(decliner questionnaire evaluated factors that influenced refusal of screening for parents who received information about the )] TJ ET BT 26.250 146.515 Td /F1 9.8 Tf [(study, but declined participation. This questionnaire was included in the study packet. Parents could complete and return it )] TJ ET BT 26.250 134.610 Td /F1 9.8 Tf [(during the appointment or in a preaddressed stamped envelope. The provider questionnaire was designed for providers in )] TJ ET BT 26.250 122.706 Td /F1 9.8 Tf [(participating clinics to assess their attitudes and opinions about DMD screening and its incorporation into their clinical practice. )] TJ ET BT 26.250 110.801 Td /F1 9.8 Tf [(Pediatricians, physician assistants, nurses, nurse practitioners, and medical assistants involved in sample collection were asked )] TJ ET BT 26.250 98.896 Td /F1 9.8 Tf [(to fill out the questionnaire after completion of the study.)] TJ ET BT 26.250 79.491 Td /F5 9.8 Tf [(Statistical Analysis)] TJ ET BT 26.250 60.087 Td /F1 9.8 Tf [(Questionnaire data were encoded using SurveyMonkey \()] TJ ET BT 281.486 60.087 Td /F1 9.8 Tf [(www.surveymonkey.com)] TJ ET BT 389.291 60.087 Td /F1 9.8 Tf [(, LLC, Palo Alto, CA\). Data were verified )] TJ ET BT 26.250 48.182 Td /F1 9.8 Tf [(and then imported into Statistical Package for the Social Sciences \(SPSS\) version 15.0. for analysis)] TJ ET 0.267 0.267 0.267 rg BT 455.981 49.689 Td /F4 8.7 Tf [(30)] TJ ET 0.271 0.267 0.267 rg BT 465.619 48.182 Td /F1 9.8 Tf [(. Descriptive statistics )] TJ ET BT 26.250 36.277 Td /F1 9.8 Tf [(were computed to characterize the responses. To assess differences between groups,)] TJ ET BT 398.544 36.277 Td /F5 9.8 Tf [( t)] TJ ET BT 403.965 36.277 Td /F1 9.8 Tf [( tests for continuous data and chi-)] TJ ET Q q 0.000 0.000 0.000 rg BT 291.710 19.825 Td /F1 11.0 Tf [(2)] TJ ET BT 25.000 19.825 Td /F1 11.0 Tf [(PLOS Currents Muscular Dystrophy)] TJ ET Q endstream endobj 256 0 obj << /Type /Font /Subtype /Type1 /Name /F5 /BaseFont /Helvetica-Oblique /Encoding /WinAnsiEncoding >> endobj 257 0 obj << /Type /Annot /Subtype /Link /A 258 0 R /Border [0 0 0] /H /I /Rect [ 114.5655 768.1817 124.2028 777.0000 ] >> endobj 258 0 obj << /Type /Action >> endobj 259 0 obj << /Type /Annot /Subtype /Link /A 260 0 R /Border [0 0 0] /H /I /Rect [ 124.2028 768.1817 133.8402 777.0000 ] >> endobj 260 0 obj << /Type /Action >> endobj 261 0 obj << /Type /Annot /Subtype /Link /A 262 0 R /Border [0 0 0] /H /I /Rect [ 424.5570 736.8722 434.1943 745.6905 ] >> endobj 262 0 obj << /Type /Action >> endobj 263 0 obj << /Type /Annot /Subtype /Link /A 264 0 R /Border [0 0 0] /H /I /Rect [ 192.0877 701.1579 201.7251 709.9762 ] >> endobj 264 0 obj << /Type /Action >> endobj 265 0 obj << /Type /Annot /Subtype /Link /A 266 0 R /Border [0 0 0] /H /I /Rect [ 389.3107 646.0389 398.9481 654.8573 ] >> endobj 266 0 obj << /Type /Action >> endobj 267 0 obj << /Type /Annot /Subtype /Link /A 268 0 R /Border [0 0 0] /H /I /Rect [ 415.3628 395.9109 425.0001 404.7293 ] >> endobj 268 0 obj << /Type /Action >> endobj 269 0 obj << /Type /Annot /Subtype /Link /A 270 0 R /Border [0 0 0] /H /I /Rect [ 102.1245 372.1014 111.7618 380.9198 ] >> endobj 270 0 obj << /Type /Action >> endobj 271 0 obj << /Type /Annot /Subtype /Link /A 272 0 R /Border [0 0 0] /H /I /Rect [ 455.9812 48.8874 465.6186 57.7057 ] >> endobj 272 0 obj << /Type /Action >> endobj 273 0 obj << /Type /Annot /Subtype /Link /A 274 0 R /Border [0 0 0] /H /I /Rect [ 114.5655 768.1817 124.2028 777.0000 ] >> endobj 274 0 obj << /Type /Action >> endobj 275 0 obj << /Type /Annot /Subtype /Link /A 276 0 R /Border [0 0 0] /H /I /Rect [ 124.2028 768.1817 133.8402 777.0000 ] >> endobj 276 0 obj << /Type /Action >> endobj 277 0 obj << /Type /Annot /Subtype /Link /A 278 0 R /Border [0 0 0] /H /I /Rect [ 424.5570 736.8722 434.1943 745.6905 ] >> endobj 278 0 obj << /Type /Action >> endobj 279 0 obj << /Type /Annot /Subtype /Link /A 280 0 R /Border [0 0 0] /H /I /Rect [ 192.0877 701.1579 201.7251 709.9762 ] >> endobj 280 0 obj << /Type /Action >> endobj 281 0 obj << /Type /Annot /Subtype /Link /A 282 0 R /Border [0 0 0] /H /I /Rect [ 389.3107 646.0389 398.9481 654.8573 ] >> endobj 282 0 obj << /Type /Action >> endobj 283 0 obj << /Type /Annot /Subtype /Link /A 284 0 R /Border [0 0 0] /H /I /Rect [ 415.3628 395.9109 425.0001 404.7293 ] >> endobj 284 0 obj << /Type /Action >> endobj 285 0 obj << /Type /Annot /Subtype /Link /A 286 0 R /Border [0 0 0] /H /I /Rect [ 102.1245 372.1014 111.7618 380.9198 ] >> endobj 286 0 obj << /Type /Action >> endobj 287 0 obj << /Type /Annot /Subtype /Link /A 288 0 R /Border [0 0 0] /H /I /Rect [ 455.9812 48.8874 465.6186 57.7057 ] >> endobj 288 0 obj << /Type /Action >> endobj 289 0 obj << /Type /Annot /Subtype /Link /A 290 0 R /Border [0 0 0] /H /I /Rect [ 114.5655 768.1817 124.2028 777.0000 ] >> endobj 290 0 obj << /Type /Action >> endobj 291 0 obj << /Type /Annot /Subtype /Link /A 292 0 R /Border [0 0 0] /H /I /Rect [ 124.2028 768.1817 133.8402 777.0000 ] >> endobj 292 0 obj << /Type /Action >> endobj 293 0 obj << /Type /Annot /Subtype /Link /A 294 0 R /Border [0 0 0] /H /I /Rect [ 424.5570 736.8722 434.1943 745.6905 ] >> endobj 294 0 obj << /Type /Action >> endobj 295 0 obj << /Type /Annot /Subtype /Link /A 296 0 R /Border [0 0 0] /H /I /Rect [ 192.0877 701.1579 201.7251 709.9762 ] >> endobj 296 0 obj << /Type /Action >> endobj 297 0 obj << /Type /Annot /Subtype /Link /A 298 0 R /Border [0 0 0] /H /I /Rect [ 389.3107 646.0389 398.9481 654.8573 ] >> endobj 298 0 obj << /Type /Action >> endobj 299 0 obj << /Type /Annot /Subtype /Link /A 300 0 R /Border [0 0 0] /H /I /Rect [ 415.3628 395.9109 425.0001 404.7293 ] >> endobj 300 0 obj << /Type /Action >> endobj 301 0 obj << /Type /Annot /Subtype /Link /A 302 0 R /Border [0 0 0] /H /I /Rect [ 102.1245 372.1014 111.7618 380.9198 ] >> endobj 302 0 obj << /Type /Action >> endobj 303 0 obj << /Type /Annot /Subtype /Link /A 304 0 R /Border [0 0 0] /H /I /Rect [ 455.9812 48.8874 465.6186 57.7057 ] >> endobj 304 0 obj << /Type /Action >> endobj 305 0 obj << /Type /Page /Parent 3 0 R /Contents 306 0 R >> endobj 306 0 obj << /Length 37717 >> stream 0.271 0.267 0.267 rg q 15.000 27.588 577.500 749.412 re W n 0.271 0.267 0.267 rg BT 26.250 767.476 Td /F1 9.8 Tf [(squares for categorical data were computed. Statistical significance was determined to be )] TJ ET BT 415.334 767.476 Td /F5 9.8 Tf [(P)] TJ ET BT 421.837 767.476 Td /F1 9.8 Tf [( < 0.05.)] TJ ET BT 26.250 748.071 Td /F5 9.8 Tf [(Other Considerations)] TJ ET BT 26.250 728.667 Td /F1 9.8 Tf [(An advisory group composed of individuals with varying expertise in DMD \(i.e. health care providers, Muscular Dystrophy )] TJ ET BT 26.250 716.762 Td /F1 9.8 Tf [(Association representatives, and parents of males with DMD\) was formed to provide guidance and oversight for the infant )] TJ ET BT 26.250 704.857 Td /F1 9.8 Tf [(screening study. The institutional review boards \(IRBs\) of Emory University and CDC approved the study protocol.)] TJ ET BT 26.250 668.255 Td /F4 12.0 Tf [(Results)] TJ ET BT 26.250 648.300 Td /F1 9.8 Tf [(From February 1, 2007 through September 30, 2007, the four clinics scheduled a total of 524 infant males for the 12-month well-)] TJ ET BT 26.250 636.396 Td /F1 9.8 Tf [(baby visit. Study staff approached 352 parents of 361 of these infants about participation in the study. A total of 266 \(75.6%\) )] TJ ET BT 26.250 624.491 Td /F1 9.8 Tf [(parents of 273 infant males \(including 7 pairs of twins\) consented to DMD screening, 69 \(19.6%\) parents of 71 infant males )] TJ ET BT 26.250 612.586 Td /F1 9.8 Tf [(\(including 2 pairs of twins\) declined, and 17 \(4.8%\) infant males were excluded.)] TJ ET BT 26.250 593.181 Td /F1 9.8 Tf [(Although parents of 273 infants had consented to screening, blood samples were collected from only 264 males. The nine )] TJ ET BT 26.250 581.277 Td /F1 9.8 Tf [(infants without samples either had left prior to receiving the fingerstick or already had the fingerstick for the anemia test at a )] TJ ET BT 26.250 569.372 Td /F1 9.8 Tf [(previous visit and no extra blood had been collected for DMD screening. The samples were analyzed for total CK. The mean )] TJ ET BT 26.250 557.467 Td /F1 9.8 Tf [(age at sample collection was 12.31 months \(range: 1115 months; standard deviation [SD] = 0.6\). The mean CK level detected )] TJ ET BT 26.250 545.562 Td /F1 9.8 Tf [(was 113.8 units/liter \(U/L\) \(range: 12221 U/L; SD = 37.1\). All samples fell within the normal CK reference range. Thus, no )] TJ ET BT 26.250 533.658 Td /F1 9.8 Tf [(further testing was performed and all infant males received a negative screening result.)] TJ ET BT 26.250 514.253 Td /F5 9.8 Tf [(Demographics of Questionnaire Respondents)] TJ ET BT 26.250 494.848 Td /F1 9.8 Tf [(Of the 259 parents of the 264 boys \(5 pairs of twins\) screened, 138 \(53.3%\) returned completed post-screening questionnaires, )] TJ ET BT 26.250 482.943 Td /F1 9.8 Tf [(about half from the first mailing and half from the second mailing. Demographics of questionnaire respondents are described in )] TJ ET BT 26.250 471.039 Td /F4 9.8 Tf [(Table 1)] TJ ET BT 59.849 471.039 Td /F1 9.8 Tf [(. Mothers were the primary respondents to the questionnaire. Most respondents \(91.9%\) were married. The respondents )] TJ ET BT 26.250 459.134 Td /F1 9.8 Tf [(were well educated; 35.1% had completed a 4-year college degree and 55.2% had completed post-graduate study. )] TJ ET BT 26.250 447.229 Td /F1 9.8 Tf [(Approximately 80% of the sample described themselves as White, and 13% as Black or African American. Only 3.7% of the )] TJ ET BT 26.250 435.324 Td /F1 9.8 Tf [(sample indicated that they were Hispanic or Latino.)] TJ ET q 26.250 397.971 555.000 27.473 re W n 0.271 0.267 0.267 rg BT 26.250 414.454 Td /F1 9.8 Tf [(Table 1. Demographic characteristics of parents who accepted or declined Duchenne muscular dystrophy screening for their )] TJ ET BT 26.250 400.718 Td /F1 9.8 Tf [(sons and of providers who completed a questionnaire)] TJ ET Q 1.000 1.000 1.000 rg 26.250 96.397 555.000 294.074 re f 0.965 0.965 0.965 rg 27.000 377.441 184.311 12.280 re f 0.267 0.267 0.267 rg 26.625 389.346 184.686 0.750 re f 26.625 377.066 0.750 13.030 re f 0.271 0.267 0.267 rg BT 31.500 380.197 Td /F4 9.8 Tf [(Characteristic)] TJ ET 0.965 0.965 0.965 rg 211.311 377.441 139.086 12.280 re f 0.267 0.267 0.267 rg 211.311 389.346 139.086 0.750 re f 0.271 0.267 0.267 rg BT 215.811 380.197 Td /F4 9.8 Tf [(Participant \(n = 138*\))] TJ ET 0.965 0.965 0.965 rg 350.397 377.441 114.103 12.280 re f 0.267 0.267 0.267 rg 350.397 389.346 114.103 0.750 re f 0.271 0.267 0.267 rg BT 354.897 380.197 Td /F4 9.8 Tf [(Decliner \(n = 22\)*)] TJ ET 0.965 0.965 0.965 rg 464.499 377.441 116.001 12.280 re f 0.267 0.267 0.267 rg 464.499 389.346 116.376 0.750 re f 580.125 377.066 0.750 13.030 re f 0.271 0.267 0.267 rg BT 468.999 380.197 Td /F4 9.8 Tf [(Provider \(n = 25\)*)] TJ ET 0.267 0.267 0.267 rg 26.625 377.066 185.061 0.750 re f 26.625 338.291 0.750 39.525 re f 0.271 0.267 0.267 rg BT 31.875 367.211 Td /F5 9.8 Tf [(Race, n \(%\))] TJ ET BT 31.875 359.580 Td /F1 9.8 Tf [(Black or African American)] TJ ET BT 31.875 351.949 Td /F1 9.8 Tf [(White)] TJ ET BT 31.875 344.317 Td /F1 9.8 Tf [(Other)] TJ ET 0.267 0.267 0.267 rg 210.936 377.066 139.836 0.750 re f 210.936 338.291 0.750 39.525 re f 0.271 0.267 0.267 rg BT 216.186 367.211 Td /F1 9.8 Tf [(18 \(13.2\))] TJ ET BT 216.186 359.580 Td /F1 9.8 Tf [(108 \(79.4\))] TJ ET BT 216.186 351.949 Td /F1 9.8 Tf [(10 \(7.4\))] TJ ET 0.267 0.267 0.267 rg 350.022 377.066 114.853 0.750 re f 350.022 338.291 0.750 39.525 re f 0.271 0.267 0.267 rg BT 355.272 367.211 Td /F1 9.8 Tf [(3 \(13.6\))] TJ ET BT 355.272 359.580 Td /F1 9.8 Tf [(16 \(72.7\))] TJ ET BT 355.272 351.949 Td /F1 9.8 Tf [(3 \(13.6\))] TJ ET 0.267 0.267 0.267 rg 464.124 377.066 116.751 0.750 re f 464.124 338.291 0.750 39.525 re f 580.125 338.291 0.750 39.525 re f 0.271 0.267 0.267 rg BT 469.374 367.211 Td /F1 9.8 Tf [(4 \(18.2\))] TJ ET BT 469.374 359.580 Td /F1 9.8 Tf [(17 \(77.3\))] TJ ET BT 469.374 351.949 Td /F1 9.8 Tf [(1 \(4.5\))] TJ ET 0.267 0.267 0.267 rg 26.625 338.291 185.061 0.750 re f 26.625 307.147 0.750 31.894 re f 0.271 0.267 0.267 rg BT 31.875 328.436 Td /F5 9.8 Tf [(Ethnicity, n \(%\))] TJ ET BT 31.875 320.805 Td /F1 9.8 Tf [(Hispanic or Latino)] TJ ET BT 31.875 313.174 Td /F1 9.8 Tf [(Non-Hispanic or non-Latino)] TJ ET 0.267 0.267 0.267 rg 210.936 338.291 139.836 0.750 re f 210.936 307.147 0.750 31.894 re f 0.271 0.267 0.267 rg BT 216.186 328.436 Td /F1 9.8 Tf [(5 \(3.7\))] TJ ET BT 216.186 320.805 Td /F1 9.8 Tf [(131 \(96.3\))] TJ ET 0.267 0.267 0.267 rg 350.022 338.291 114.853 0.750 re f 350.022 307.147 0.750 31.894 re f 0.271 0.267 0.267 rg BT 355.272 328.436 Td /F1 9.8 Tf [(0 \(0\))] TJ ET BT 355.272 320.805 Td /F1 9.8 Tf [(22 \(100\))] TJ ET 0.267 0.267 0.267 rg 464.124 338.291 116.751 0.750 re f 464.124 307.147 0.750 31.894 re f 580.125 307.147 0.750 31.894 re f 0.271 0.267 0.267 rg BT 469.374 328.436 Td /F1 9.8 Tf [(0 \(0\))] TJ ET BT 469.374 320.805 Td /F1 9.8 Tf [(22 \(100\))] TJ ET 0.267 0.267 0.267 rg 26.625 307.147 185.061 0.750 re f 26.625 268.372 0.750 39.525 re f 0.271 0.267 0.267 rg BT 31.875 297.292 Td /F5 9.8 Tf [(Relationship to child, n \(%\))] TJ ET BT 31.875 289.661 Td /F1 9.8 Tf [(Mother)] TJ ET BT 31.875 282.030 Td /F1 9.8 Tf [(Father)] TJ ET BT 31.875 274.399 Td /F1 9.8 Tf [(Other)] TJ ET 0.267 0.267 0.267 rg 210.936 307.147 139.836 0.750 re f 210.936 268.372 0.750 39.525 re f 0.271 0.267 0.267 rg BT 216.186 297.292 Td /F1 9.8 Tf [(120 \(88.2\))] TJ ET BT 216.186 289.661 Td /F1 9.8 Tf [(15 \(11.0\))] TJ ET BT 216.186 282.030 Td /F1 9.8 Tf [(1 \(1.7\))] TJ ET 0.267 0.267 0.267 rg 350.022 307.147 114.853 0.750 re f 350.022 268.372 0.750 39.525 re f 0.271 0.267 0.267 rg BT 355.272 297.292 Td /F1 9.8 Tf [(20 \(90.9\))] TJ ET BT 355.272 289.661 Td /F1 9.8 Tf [(2 \(9.1\))] TJ ET BT 355.272 282.030 Td /F1 9.8 Tf [(0 \(0\))] TJ ET 0.267 0.267 0.267 rg 464.124 307.147 116.751 0.750 re f 464.124 268.372 0.750 39.525 re f 580.125 268.372 0.750 39.525 re f 26.625 268.372 185.061 0.750 re f 26.625 237.229 0.750 31.894 re f 0.271 0.267 0.267 rg BT 31.875 258.517 Td /F5 9.8 Tf [(Marital Status, n \(%\))] TJ ET BT 31.875 250.886 Td /F1 9.8 Tf [(Married)] TJ ET BT 31.875 243.255 Td /F1 9.8 Tf [(Not married)] TJ ET 0.267 0.267 0.267 rg 210.936 268.372 139.836 0.750 re f 210.936 237.229 0.750 31.894 re f 0.271 0.267 0.267 rg BT 216.186 258.517 Td /F1 9.8 Tf [(125 \(91.9\))] TJ ET BT 216.186 250.886 Td /F1 9.8 Tf [(11 \(8.0\))] TJ ET 0.267 0.267 0.267 rg 350.022 268.372 114.853 0.750 re f 350.022 237.229 0.750 31.894 re f 0.271 0.267 0.267 rg BT 355.272 258.517 Td /F1 9.8 Tf [(18 \(94.7\))] TJ ET BT 355.272 250.886 Td /F1 9.8 Tf [(1 \(5.3\))] TJ ET 0.267 0.267 0.267 rg 464.124 268.372 116.751 0.750 re f 464.124 237.229 0.750 31.894 re f 580.125 237.229 0.750 31.894 re f 26.625 237.229 185.061 0.750 re f 26.625 198.454 0.750 39.525 re f 0.271 0.267 0.267 rg BT 31.875 227.374 Td /F5 9.8 Tf [(Education, n \(%\))] TJ ET BT 31.875 219.742 Td /F1 9.8 Tf [(4-year college graduate)] TJ ET BT 31.875 212.111 Td /F1 9.8 Tf [(Post-graduate study)] TJ ET BT 31.875 204.480 Td /F1 9.8 Tf [(Other)] TJ ET 0.267 0.267 0.267 rg 210.936 237.229 139.836 0.750 re f 210.936 198.454 0.750 39.525 re f 0.271 0.267 0.267 rg BT 216.186 227.374 Td /F1 9.8 Tf [(47 \(35.1\))] TJ ET BT 216.186 219.742 Td /F1 9.8 Tf [(74 \(55.2\))] TJ ET BT 216.186 212.111 Td /F1 9.8 Tf [(13 \(9.7\))] TJ ET 0.267 0.267 0.267 rg 350.022 237.229 114.853 0.750 re f 350.022 198.454 0.750 39.525 re f 0.271 0.267 0.267 rg BT 355.272 227.374 Td /F1 9.8 Tf [(10 \(52.6\))] TJ ET BT 355.272 219.742 Td /F1 9.8 Tf [(9 \(47.4\))] TJ ET BT 355.272 212.111 Td /F1 9.8 Tf [(0 \(0\))] TJ ET 0.267 0.267 0.267 rg 464.124 237.229 116.751 0.750 re f 464.124 198.454 0.750 39.525 re f 580.125 198.454 0.750 39.525 re f 26.625 198.454 185.061 0.750 re f 26.625 167.310 0.750 31.894 re f 0.271 0.267 0.267 rg BT 31.875 188.599 Td /F5 9.8 Tf [(Sex, n \(%\))] TJ ET BT 31.875 180.967 Td /F1 9.8 Tf [(Male)] TJ ET BT 31.875 173.336 Td /F1 9.8 Tf [(Female)] TJ ET 0.267 0.267 0.267 rg 210.936 198.454 139.836 0.750 re f 210.936 167.310 0.750 31.894 re f 350.022 198.454 114.853 0.750 re f 350.022 167.310 0.750 31.894 re f 464.124 198.454 116.751 0.750 re f 464.124 167.310 0.750 31.894 re f 580.125 167.310 0.750 31.894 re f 0.271 0.267 0.267 rg BT 469.374 188.599 Td /F1 9.8 Tf [(5 \(22.7\))] TJ ET BT 469.374 180.967 Td /F1 9.8 Tf [(17 \(77.3\))] TJ ET 0.267 0.267 0.267 rg 26.625 167.310 185.061 0.750 re f 26.625 128.535 0.750 39.525 re f 0.271 0.267 0.267 rg BT 31.875 157.455 Td /F5 9.8 Tf [(Role, n \(%\))] TJ ET BT 31.875 149.824 Td /F1 9.8 Tf [(Physician)] TJ ET BT 31.875 142.192 Td /F1 9.8 Tf [(Nurse)] TJ ET BT 31.875 134.561 Td /F1 9.8 Tf [(Other)] TJ ET 0.267 0.267 0.267 rg 210.936 167.310 139.836 0.750 re f 210.936 128.535 0.750 39.525 re f 350.022 167.310 114.853 0.750 re f 350.022 128.535 0.750 39.525 re f 464.124 167.310 116.751 0.750 re f 464.124 128.535 0.750 39.525 re f 580.125 128.535 0.750 39.525 re f 0.271 0.267 0.267 rg BT 469.374 157.455 Td /F1 9.8 Tf [(7 \(31.8\))] TJ ET BT 469.374 149.824 Td /F1 9.8 Tf [(9 \(40.9\))] TJ ET BT 469.374 142.192 Td /F1 9.8 Tf [(6 \(27.2\))] TJ ET 0.267 0.267 0.267 rg 26.625 128.535 185.061 0.750 re f 26.625 112.654 0.750 16.631 re f 0.271 0.267 0.267 rg BT 31.875 118.680 Td /F5 9.8 Tf [(Years in practice, mean \(range\))] TJ ET 0.267 0.267 0.267 rg 210.936 128.535 139.836 0.750 re f 210.936 112.654 0.750 16.631 re f 350.022 128.535 114.853 0.750 re f 350.022 112.654 0.750 16.631 re f 464.124 128.535 116.751 0.750 re f 464.124 112.654 0.750 16.631 re f 580.125 112.654 0.750 16.631 re f 0.271 0.267 0.267 rg BT 469.374 118.680 Td /F1 9.8 Tf [(15.7 \(2-37\))] TJ ET 0.267 0.267 0.267 rg 26.625 112.654 184.686 0.750 re f 26.625 96.772 184.686 0.750 re f 211.311 112.654 139.086 0.750 re f 211.311 96.772 139.086 0.750 re f 350.397 112.654 114.103 0.750 re f 350.397 96.772 114.103 0.750 re f 464.499 112.654 116.376 0.750 re f 464.499 96.772 116.376 0.750 re f 26.625 96.772 0.750 16.631 re f 580.125 96.772 0.750 16.631 re f 0.271 0.267 0.267 rg BT 31.875 102.799 Td /F1 9.8 Tf [(*Total n varies for each characteristic due to missing responses.)] TJ ET BT 26.250 41.874 Td /F1 9.8 Tf [(Twenty-two \(31.0%\) of the sixty-nine parents who declined participation returned decliner questionnaires \()] TJ ET BT 481.975 41.874 Td /F4 9.8 Tf [(Table 1)] TJ ET BT 515.573 41.874 Td /F1 9.8 Tf [(\). The )] TJ ET Q q 15.000 27.588 577.500 749.412 re W n 0.271 0.267 0.267 rg BT 26.250 767.476 Td /F1 9.8 Tf [(squares for categorical data were computed. Statistical significance was determined to be )] TJ ET BT 415.334 767.476 Td /F5 9.8 Tf [(P)] TJ ET BT 421.837 767.476 Td /F1 9.8 Tf [( < 0.05.)] TJ ET BT 26.250 748.071 Td /F5 9.8 Tf [(Other Considerations)] TJ ET BT 26.250 728.667 Td /F1 9.8 Tf [(An advisory group composed of individuals with varying expertise in DMD \(i.e. health care providers, Muscular Dystrophy )] TJ ET BT 26.250 716.762 Td /F1 9.8 Tf [(Association representatives, and parents of males with DMD\) was formed to provide guidance and oversight for the infant )] TJ ET BT 26.250 704.857 Td /F1 9.8 Tf [(screening study. The institutional review boards \(IRBs\) of Emory University and CDC approved the study protocol.)] TJ ET BT 26.250 668.255 Td /F4 12.0 Tf [(Results)] TJ ET BT 26.250 648.300 Td /F1 9.8 Tf [(From February 1, 2007 through September 30, 2007, the four clinics scheduled a total of 524 infant males for the 12-month well-)] TJ ET BT 26.250 636.396 Td /F1 9.8 Tf [(baby visit. Study staff approached 352 parents of 361 of these infants about participation in the study. A total of 266 \(75.6%\) )] TJ ET BT 26.250 624.491 Td /F1 9.8 Tf [(parents of 273 infant males \(including 7 pairs of twins\) consented to DMD screening, 69 \(19.6%\) parents of 71 infant males )] TJ ET BT 26.250 612.586 Td /F1 9.8 Tf [(\(including 2 pairs of twins\) declined, and 17 \(4.8%\) infant males were excluded.)] TJ ET BT 26.250 593.181 Td /F1 9.8 Tf [(Although parents of 273 infants had consented to screening, blood samples were collected from only 264 males. The nine )] TJ ET BT 26.250 581.277 Td /F1 9.8 Tf [(infants without samples either had left prior to receiving the fingerstick or already had the fingerstick for the anemia test at a )] TJ ET BT 26.250 569.372 Td /F1 9.8 Tf [(previous visit and no extra blood had been collected for DMD screening. The samples were analyzed for total CK. The mean )] TJ ET BT 26.250 557.467 Td /F1 9.8 Tf [(age at sample collection was 12.31 months \(range: 1115 months; standard deviation [SD] = 0.6\). The mean CK level detected )] TJ ET BT 26.250 545.562 Td /F1 9.8 Tf [(was 113.8 units/liter \(U/L\) \(range: 12221 U/L; SD = 37.1\). All samples fell within the normal CK reference range. Thus, no )] TJ ET BT 26.250 533.658 Td /F1 9.8 Tf [(further testing was performed and all infant males received a negative screening result.)] TJ ET BT 26.250 514.253 Td /F5 9.8 Tf [(Demographics of Questionnaire Respondents)] TJ ET BT 26.250 494.848 Td /F1 9.8 Tf [(Of the 259 parents of the 264 boys \(5 pairs of twins\) screened, 138 \(53.3%\) returned completed post-screening questionnaires, )] TJ ET BT 26.250 482.943 Td /F1 9.8 Tf [(about half from the first mailing and half from the second mailing. Demographics of questionnaire respondents are described in )] TJ ET BT 26.250 471.039 Td /F4 9.8 Tf [(Table 1)] TJ ET BT 59.849 471.039 Td /F1 9.8 Tf [(. Mothers were the primary respondents to the questionnaire. Most respondents \(91.9%\) were married. The respondents )] TJ ET BT 26.250 459.134 Td /F1 9.8 Tf [(were well educated; 35.1% had completed a 4-year college degree and 55.2% had completed post-graduate study. )] TJ ET BT 26.250 447.229 Td /F1 9.8 Tf [(Approximately 80% of the sample described themselves as White, and 13% as Black or African American. Only 3.7% of the )] TJ ET BT 26.250 435.324 Td /F1 9.8 Tf [(sample indicated that they were Hispanic or Latino.)] TJ ET q 26.250 397.971 555.000 27.473 re W n 0.271 0.267 0.267 rg BT 26.250 414.454 Td /F1 9.8 Tf [(Table 1. Demographic characteristics of parents who accepted or declined Duchenne muscular dystrophy screening for their )] TJ ET BT 26.250 400.718 Td /F1 9.8 Tf [(sons and of providers who completed a questionnaire)] TJ ET Q 1.000 1.000 1.000 rg 26.250 96.397 555.000 294.074 re f 0.965 0.965 0.965 rg 27.000 377.441 184.311 12.280 re f 0.267 0.267 0.267 rg 26.625 389.346 184.686 0.750 re f 26.625 377.066 0.750 13.030 re f 0.271 0.267 0.267 rg BT 31.500 380.197 Td /F4 9.8 Tf [(Characteristic)] TJ ET 0.965 0.965 0.965 rg 211.311 377.441 139.086 12.280 re f 0.267 0.267 0.267 rg 211.311 389.346 139.086 0.750 re f 0.271 0.267 0.267 rg BT 215.811 380.197 Td /F4 9.8 Tf [(Participant \(n = 138*\))] TJ ET 0.965 0.965 0.965 rg 350.397 377.441 114.103 12.280 re f 0.267 0.267 0.267 rg 350.397 389.346 114.103 0.750 re f 0.271 0.267 0.267 rg BT 354.897 380.197 Td /F4 9.8 Tf [(Decliner \(n = 22\)*)] TJ ET 0.965 0.965 0.965 rg 464.499 377.441 116.001 12.280 re f 0.267 0.267 0.267 rg 464.499 389.346 116.376 0.750 re f 580.125 377.066 0.750 13.030 re f 0.271 0.267 0.267 rg BT 468.999 380.197 Td /F4 9.8 Tf [(Provider \(n = 25\)*)] TJ ET 0.267 0.267 0.267 rg 26.625 377.066 185.061 0.750 re f 26.625 338.291 0.750 39.525 re f 0.271 0.267 0.267 rg BT 31.875 367.211 Td /F5 9.8 Tf [(Race, n \(%\))] TJ ET BT 31.875 359.580 Td /F1 9.8 Tf [(Black or African American)] TJ ET BT 31.875 351.949 Td /F1 9.8 Tf [(White)] TJ ET BT 31.875 344.317 Td /F1 9.8 Tf [(Other)] TJ ET 0.267 0.267 0.267 rg 210.936 377.066 139.836 0.750 re f 210.936 338.291 0.750 39.525 re f 0.271 0.267 0.267 rg BT 216.186 367.211 Td /F1 9.8 Tf [(18 \(13.2\))] TJ ET BT 216.186 359.580 Td /F1 9.8 Tf [(108 \(79.4\))] TJ ET BT 216.186 351.949 Td /F1 9.8 Tf [(10 \(7.4\))] TJ ET 0.267 0.267 0.267 rg 350.022 377.066 114.853 0.750 re f 350.022 338.291 0.750 39.525 re f 0.271 0.267 0.267 rg BT 355.272 367.211 Td /F1 9.8 Tf [(3 \(13.6\))] TJ ET BT 355.272 359.580 Td /F1 9.8 Tf [(16 \(72.7\))] TJ ET BT 355.272 351.949 Td /F1 9.8 Tf [(3 \(13.6\))] TJ ET 0.267 0.267 0.267 rg 464.124 377.066 116.751 0.750 re f 464.124 338.291 0.750 39.525 re f 580.125 338.291 0.750 39.525 re f 0.271 0.267 0.267 rg BT 469.374 367.211 Td /F1 9.8 Tf [(4 \(18.2\))] TJ ET BT 469.374 359.580 Td /F1 9.8 Tf [(17 \(77.3\))] TJ ET BT 469.374 351.949 Td /F1 9.8 Tf [(1 \(4.5\))] TJ ET 0.267 0.267 0.267 rg 26.625 338.291 185.061 0.750 re f 26.625 307.147 0.750 31.894 re f 0.271 0.267 0.267 rg BT 31.875 328.436 Td /F5 9.8 Tf [(Ethnicity, n \(%\))] TJ ET BT 31.875 320.805 Td /F1 9.8 Tf [(Hispanic or Latino)] TJ ET BT 31.875 313.174 Td /F1 9.8 Tf [(Non-Hispanic or non-Latino)] TJ ET 0.267 0.267 0.267 rg 210.936 338.291 139.836 0.750 re f 210.936 307.147 0.750 31.894 re f 0.271 0.267 0.267 rg BT 216.186 328.436 Td /F1 9.8 Tf [(5 \(3.7\))] TJ ET BT 216.186 320.805 Td /F1 9.8 Tf [(131 \(96.3\))] TJ ET 0.267 0.267 0.267 rg 350.022 338.291 114.853 0.750 re f 350.022 307.147 0.750 31.894 re f 0.271 0.267 0.267 rg BT 355.272 328.436 Td /F1 9.8 Tf [(0 \(0\))] TJ ET BT 355.272 320.805 Td /F1 9.8 Tf [(22 \(100\))] TJ ET 0.267 0.267 0.267 rg 464.124 338.291 116.751 0.750 re f 464.124 307.147 0.750 31.894 re f 580.125 307.147 0.750 31.894 re f 0.271 0.267 0.267 rg BT 469.374 328.436 Td /F1 9.8 Tf [(0 \(0\))] TJ ET BT 469.374 320.805 Td /F1 9.8 Tf [(22 \(100\))] TJ ET 0.267 0.267 0.267 rg 26.625 307.147 185.061 0.750 re f 26.625 268.372 0.750 39.525 re f 0.271 0.267 0.267 rg BT 31.875 297.292 Td /F5 9.8 Tf [(Relationship to child, n \(%\))] TJ ET BT 31.875 289.661 Td /F1 9.8 Tf [(Mother)] TJ ET BT 31.875 282.030 Td /F1 9.8 Tf [(Father)] TJ ET BT 31.875 274.399 Td /F1 9.8 Tf [(Other)] TJ ET 0.267 0.267 0.267 rg 210.936 307.147 139.836 0.750 re f 210.936 268.372 0.750 39.525 re f 0.271 0.267 0.267 rg BT 216.186 297.292 Td /F1 9.8 Tf [(120 \(88.2\))] TJ ET BT 216.186 289.661 Td /F1 9.8 Tf [(15 \(11.0\))] TJ ET BT 216.186 282.030 Td /F1 9.8 Tf [(1 \(1.7\))] TJ ET 0.267 0.267 0.267 rg 350.022 307.147 114.853 0.750 re f 350.022 268.372 0.750 39.525 re f 0.271 0.267 0.267 rg BT 355.272 297.292 Td /F1 9.8 Tf [(20 \(90.9\))] TJ ET BT 355.272 289.661 Td /F1 9.8 Tf [(2 \(9.1\))] TJ ET BT 355.272 282.030 Td /F1 9.8 Tf [(0 \(0\))] TJ ET 0.267 0.267 0.267 rg 464.124 307.147 116.751 0.750 re f 464.124 268.372 0.750 39.525 re f 580.125 268.372 0.750 39.525 re f 26.625 268.372 185.061 0.750 re f 26.625 237.229 0.750 31.894 re f 0.271 0.267 0.267 rg BT 31.875 258.517 Td /F5 9.8 Tf [(Marital Status, n \(%\))] TJ ET BT 31.875 250.886 Td /F1 9.8 Tf [(Married)] TJ ET BT 31.875 243.255 Td /F1 9.8 Tf [(Not married)] TJ ET 0.267 0.267 0.267 rg 210.936 268.372 139.836 0.750 re f 210.936 237.229 0.750 31.894 re f 0.271 0.267 0.267 rg BT 216.186 258.517 Td /F1 9.8 Tf [(125 \(91.9\))] TJ ET BT 216.186 250.886 Td /F1 9.8 Tf [(11 \(8.0\))] TJ ET 0.267 0.267 0.267 rg 350.022 268.372 114.853 0.750 re f 350.022 237.229 0.750 31.894 re f 0.271 0.267 0.267 rg BT 355.272 258.517 Td /F1 9.8 Tf [(18 \(94.7\))] TJ ET BT 355.272 250.886 Td /F1 9.8 Tf [(1 \(5.3\))] TJ ET 0.267 0.267 0.267 rg 464.124 268.372 116.751 0.750 re f 464.124 237.229 0.750 31.894 re f 580.125 237.229 0.750 31.894 re f 26.625 237.229 185.061 0.750 re f 26.625 198.454 0.750 39.525 re f 0.271 0.267 0.267 rg BT 31.875 227.374 Td /F5 9.8 Tf [(Education, n \(%\))] TJ ET BT 31.875 219.742 Td /F1 9.8 Tf [(4-year college graduate)] TJ ET BT 31.875 212.111 Td /F1 9.8 Tf [(Post-graduate study)] TJ ET BT 31.875 204.480 Td /F1 9.8 Tf [(Other)] TJ ET 0.267 0.267 0.267 rg 210.936 237.229 139.836 0.750 re f 210.936 198.454 0.750 39.525 re f 0.271 0.267 0.267 rg BT 216.186 227.374 Td /F1 9.8 Tf [(47 \(35.1\))] TJ ET BT 216.186 219.742 Td /F1 9.8 Tf [(74 \(55.2\))] TJ ET BT 216.186 212.111 Td /F1 9.8 Tf [(13 \(9.7\))] TJ ET 0.267 0.267 0.267 rg 350.022 237.229 114.853 0.750 re f 350.022 198.454 0.750 39.525 re f 0.271 0.267 0.267 rg BT 355.272 227.374 Td /F1 9.8 Tf [(10 \(52.6\))] TJ ET BT 355.272 219.742 Td /F1 9.8 Tf [(9 \(47.4\))] TJ ET BT 355.272 212.111 Td /F1 9.8 Tf [(0 \(0\))] TJ ET 0.267 0.267 0.267 rg 464.124 237.229 116.751 0.750 re f 464.124 198.454 0.750 39.525 re f 580.125 198.454 0.750 39.525 re f 26.625 198.454 185.061 0.750 re f 26.625 167.310 0.750 31.894 re f 0.271 0.267 0.267 rg BT 31.875 188.599 Td /F5 9.8 Tf [(Sex, n \(%\))] TJ ET BT 31.875 180.967 Td /F1 9.8 Tf [(Male)] TJ ET BT 31.875 173.336 Td /F1 9.8 Tf [(Female)] TJ ET 0.267 0.267 0.267 rg 210.936 198.454 139.836 0.750 re f 210.936 167.310 0.750 31.894 re f 350.022 198.454 114.853 0.750 re f 350.022 167.310 0.750 31.894 re f 464.124 198.454 116.751 0.750 re f 464.124 167.310 0.750 31.894 re f 580.125 167.310 0.750 31.894 re f 0.271 0.267 0.267 rg BT 469.374 188.599 Td /F1 9.8 Tf [(5 \(22.7\))] TJ ET BT 469.374 180.967 Td /F1 9.8 Tf [(17 \(77.3\))] TJ ET 0.267 0.267 0.267 rg 26.625 167.310 185.061 0.750 re f 26.625 128.535 0.750 39.525 re f 0.271 0.267 0.267 rg BT 31.875 157.455 Td /F5 9.8 Tf [(Role, n \(%\))] TJ ET BT 31.875 149.824 Td /F1 9.8 Tf [(Physician)] TJ ET BT 31.875 142.192 Td /F1 9.8 Tf [(Nurse)] TJ ET BT 31.875 134.561 Td /F1 9.8 Tf [(Other)] TJ ET 0.267 0.267 0.267 rg 210.936 167.310 139.836 0.750 re f 210.936 128.535 0.750 39.525 re f 350.022 167.310 114.853 0.750 re f 350.022 128.535 0.750 39.525 re f 464.124 167.310 116.751 0.750 re f 464.124 128.535 0.750 39.525 re f 580.125 128.535 0.750 39.525 re f 0.271 0.267 0.267 rg BT 469.374 157.455 Td /F1 9.8 Tf [(7 \(31.8\))] TJ ET BT 469.374 149.824 Td /F1 9.8 Tf [(9 \(40.9\))] TJ ET BT 469.374 142.192 Td /F1 9.8 Tf [(6 \(27.2\))] TJ ET 0.267 0.267 0.267 rg 26.625 128.535 185.061 0.750 re f 26.625 112.654 0.750 16.631 re f 0.271 0.267 0.267 rg BT 31.875 118.680 Td /F5 9.8 Tf [(Years in practice, mean \(range\))] TJ ET 0.267 0.267 0.267 rg 210.936 128.535 139.836 0.750 re f 210.936 112.654 0.750 16.631 re f 350.022 128.535 114.853 0.750 re f 350.022 112.654 0.750 16.631 re f 464.124 128.535 116.751 0.750 re f 464.124 112.654 0.750 16.631 re f 580.125 112.654 0.750 16.631 re f 0.271 0.267 0.267 rg BT 469.374 118.680 Td /F1 9.8 Tf [(15.7 \(2-37\))] TJ ET 0.267 0.267 0.267 rg 26.625 112.654 184.686 0.750 re f 26.625 96.772 184.686 0.750 re f 211.311 112.654 139.086 0.750 re f 211.311 96.772 139.086 0.750 re f 350.397 112.654 114.103 0.750 re f 350.397 96.772 114.103 0.750 re f 464.499 112.654 116.376 0.750 re f 464.499 96.772 116.376 0.750 re f 26.625 96.772 0.750 16.631 re f 580.125 96.772 0.750 16.631 re f 0.271 0.267 0.267 rg BT 31.875 102.799 Td /F1 9.8 Tf [(*Total n varies for each characteristic due to missing responses.)] TJ ET BT 26.250 41.874 Td /F1 9.8 Tf [(Twenty-two \(31.0%\) of the sixty-nine parents who declined participation returned decliner questionnaires \()] TJ ET BT 481.975 41.874 Td /F4 9.8 Tf [(Table 1)] TJ ET BT 515.573 41.874 Td /F1 9.8 Tf [(\). The )] TJ ET Q q 15.000 27.588 577.500 749.412 re W n 0.271 0.267 0.267 rg BT 26.250 767.476 Td /F1 9.8 Tf [(squares for categorical data were computed. Statistical significance was determined to be )] TJ ET BT 415.334 767.476 Td /F5 9.8 Tf [(P)] TJ ET BT 421.837 767.476 Td /F1 9.8 Tf [( < 0.05.)] TJ ET BT 26.250 748.071 Td /F5 9.8 Tf [(Other Considerations)] TJ ET BT 26.250 728.667 Td /F1 9.8 Tf [(An advisory group composed of individuals with varying expertise in DMD \(i.e. health care providers, Muscular Dystrophy )] TJ ET BT 26.250 716.762 Td /F1 9.8 Tf [(Association representatives, and parents of males with DMD\) was formed to provide guidance and oversight for the infant )] TJ ET BT 26.250 704.857 Td /F1 9.8 Tf [(screening study. The institutional review boards \(IRBs\) of Emory University and CDC approved the study protocol.)] TJ ET BT 26.250 668.255 Td /F4 12.0 Tf [(Results)] TJ ET BT 26.250 648.300 Td /F1 9.8 Tf [(From February 1, 2007 through September 30, 2007, the four clinics scheduled a total of 524 infant males for the 12-month well-)] TJ ET BT 26.250 636.396 Td /F1 9.8 Tf [(baby visit. Study staff approached 352 parents of 361 of these infants about participation in the study. A total of 266 \(75.6%\) )] TJ ET BT 26.250 624.491 Td /F1 9.8 Tf [(parents of 273 infant males \(including 7 pairs of twins\) consented to DMD screening, 69 \(19.6%\) parents of 71 infant males )] TJ ET BT 26.250 612.586 Td /F1 9.8 Tf [(\(including 2 pairs of twins\) declined, and 17 \(4.8%\) infant males were excluded.)] TJ ET BT 26.250 593.181 Td /F1 9.8 Tf [(Although parents of 273 infants had consented to screening, blood samples were collected from only 264 males. The nine )] TJ ET BT 26.250 581.277 Td /F1 9.8 Tf [(infants without samples either had left prior to receiving the fingerstick or already had the fingerstick for the anemia test at a )] TJ ET BT 26.250 569.372 Td /F1 9.8 Tf [(previous visit and no extra blood had been collected for DMD screening. The samples were analyzed for total CK. The mean )] TJ ET BT 26.250 557.467 Td /F1 9.8 Tf [(age at sample collection was 12.31 months \(range: 1115 months; standard deviation [SD] = 0.6\). The mean CK level detected )] TJ ET BT 26.250 545.562 Td /F1 9.8 Tf [(was 113.8 units/liter \(U/L\) \(range: 12221 U/L; SD = 37.1\). All samples fell within the normal CK reference range. Thus, no )] TJ ET BT 26.250 533.658 Td /F1 9.8 Tf [(further testing was performed and all infant males received a negative screening result.)] TJ ET BT 26.250 514.253 Td /F5 9.8 Tf [(Demographics of Questionnaire Respondents)] TJ ET BT 26.250 494.848 Td /F1 9.8 Tf [(Of the 259 parents of the 264 boys \(5 pairs of twins\) screened, 138 \(53.3%\) returned completed post-screening questionnaires, )] TJ ET BT 26.250 482.943 Td /F1 9.8 Tf [(about half from the first mailing and half from the second mailing. Demographics of questionnaire respondents are described in )] TJ ET BT 26.250 471.039 Td /F4 9.8 Tf [(Table 1)] TJ ET BT 59.849 471.039 Td /F1 9.8 Tf [(. Mothers were the primary respondents to the questionnaire. Most respondents \(91.9%\) were married. The respondents )] TJ ET BT 26.250 459.134 Td /F1 9.8 Tf [(were well educated; 35.1% had completed a 4-year college degree and 55.2% had completed post-graduate study. )] TJ ET BT 26.250 447.229 Td /F1 9.8 Tf [(Approximately 80% of the sample described themselves as White, and 13% as Black or African American. Only 3.7% of the )] TJ ET BT 26.250 435.324 Td /F1 9.8 Tf [(sample indicated that they were Hispanic or Latino.)] TJ ET q 26.250 397.971 555.000 27.473 re W n 0.271 0.267 0.267 rg BT 26.250 414.454 Td /F1 9.8 Tf [(Table 1. Demographic characteristics of parents who accepted or declined Duchenne muscular dystrophy screening for their )] TJ ET BT 26.250 400.718 Td /F1 9.8 Tf [(sons and of providers who completed a questionnaire)] TJ ET Q 1.000 1.000 1.000 rg 26.250 96.397 555.000 294.074 re f 0.965 0.965 0.965 rg 27.000 377.441 184.311 12.280 re f 0.267 0.267 0.267 rg 26.625 389.346 184.686 0.750 re f 26.625 377.066 0.750 13.030 re f 0.271 0.267 0.267 rg BT 31.500 380.197 Td /F4 9.8 Tf [(Characteristic)] TJ ET 0.965 0.965 0.965 rg 211.311 377.441 139.086 12.280 re f 0.267 0.267 0.267 rg 211.311 389.346 139.086 0.750 re f 0.271 0.267 0.267 rg BT 215.811 380.197 Td /F4 9.8 Tf [(Participant \(n = 138*\))] TJ ET 0.965 0.965 0.965 rg 350.397 377.441 114.103 12.280 re f 0.267 0.267 0.267 rg 350.397 389.346 114.103 0.750 re f 0.271 0.267 0.267 rg BT 354.897 380.197 Td /F4 9.8 Tf [(Decliner \(n = 22\)*)] TJ ET 0.965 0.965 0.965 rg 464.499 377.441 116.001 12.280 re f 0.267 0.267 0.267 rg 464.499 389.346 116.376 0.750 re f 580.125 377.066 0.750 13.030 re f 0.271 0.267 0.267 rg BT 468.999 380.197 Td /F4 9.8 Tf [(Provider \(n = 25\)*)] TJ ET 0.267 0.267 0.267 rg 26.625 377.066 185.061 0.750 re f 26.625 338.291 0.750 39.525 re f 0.271 0.267 0.267 rg BT 31.875 367.211 Td /F5 9.8 Tf [(Race, n \(%\))] TJ ET BT 31.875 359.580 Td /F1 9.8 Tf [(Black or African American)] TJ ET BT 31.875 351.949 Td /F1 9.8 Tf [(White)] TJ ET BT 31.875 344.317 Td /F1 9.8 Tf [(Other)] TJ ET 0.267 0.267 0.267 rg 210.936 377.066 139.836 0.750 re f 210.936 338.291 0.750 39.525 re f 0.271 0.267 0.267 rg BT 216.186 367.211 Td /F1 9.8 Tf [(18 \(13.2\))] TJ ET BT 216.186 359.580 Td /F1 9.8 Tf [(108 \(79.4\))] TJ ET BT 216.186 351.949 Td /F1 9.8 Tf [(10 \(7.4\))] TJ ET 0.267 0.267 0.267 rg 350.022 377.066 114.853 0.750 re f 350.022 338.291 0.750 39.525 re f 0.271 0.267 0.267 rg BT 355.272 367.211 Td /F1 9.8 Tf [(3 \(13.6\))] TJ ET BT 355.272 359.580 Td /F1 9.8 Tf [(16 \(72.7\))] TJ ET BT 355.272 351.949 Td /F1 9.8 Tf [(3 \(13.6\))] TJ ET 0.267 0.267 0.267 rg 464.124 377.066 116.751 0.750 re f 464.124 338.291 0.750 39.525 re f 580.125 338.291 0.750 39.525 re f 0.271 0.267 0.267 rg BT 469.374 367.211 Td /F1 9.8 Tf [(4 \(18.2\))] TJ ET BT 469.374 359.580 Td /F1 9.8 Tf [(17 \(77.3\))] TJ ET BT 469.374 351.949 Td /F1 9.8 Tf [(1 \(4.5\))] TJ ET 0.267 0.267 0.267 rg 26.625 338.291 185.061 0.750 re f 26.625 307.147 0.750 31.894 re f 0.271 0.267 0.267 rg BT 31.875 328.436 Td /F5 9.8 Tf [(Ethnicity, n \(%\))] TJ ET BT 31.875 320.805 Td /F1 9.8 Tf [(Hispanic or Latino)] TJ ET BT 31.875 313.174 Td /F1 9.8 Tf [(Non-Hispanic or non-Latino)] TJ ET 0.267 0.267 0.267 rg 210.936 338.291 139.836 0.750 re f 210.936 307.147 0.750 31.894 re f 0.271 0.267 0.267 rg BT 216.186 328.436 Td /F1 9.8 Tf [(5 \(3.7\))] TJ ET BT 216.186 320.805 Td /F1 9.8 Tf [(131 \(96.3\))] TJ ET 0.267 0.267 0.267 rg 350.022 338.291 114.853 0.750 re f 350.022 307.147 0.750 31.894 re f 0.271 0.267 0.267 rg BT 355.272 328.436 Td /F1 9.8 Tf [(0 \(0\))] TJ ET BT 355.272 320.805 Td /F1 9.8 Tf [(22 \(100\))] TJ ET 0.267 0.267 0.267 rg 464.124 338.291 116.751 0.750 re f 464.124 307.147 0.750 31.894 re f 580.125 307.147 0.750 31.894 re f 0.271 0.267 0.267 rg BT 469.374 328.436 Td /F1 9.8 Tf [(0 \(0\))] TJ ET BT 469.374 320.805 Td /F1 9.8 Tf [(22 \(100\))] TJ ET 0.267 0.267 0.267 rg 26.625 307.147 185.061 0.750 re f 26.625 268.372 0.750 39.525 re f 0.271 0.267 0.267 rg BT 31.875 297.292 Td /F5 9.8 Tf [(Relationship to child, n \(%\))] TJ ET BT 31.875 289.661 Td /F1 9.8 Tf [(Mother)] TJ ET BT 31.875 282.030 Td /F1 9.8 Tf [(Father)] TJ ET BT 31.875 274.399 Td /F1 9.8 Tf [(Other)] TJ ET 0.267 0.267 0.267 rg 210.936 307.147 139.836 0.750 re f 210.936 268.372 0.750 39.525 re f 0.271 0.267 0.267 rg BT 216.186 297.292 Td /F1 9.8 Tf [(120 \(88.2\))] TJ ET BT 216.186 289.661 Td /F1 9.8 Tf [(15 \(11.0\))] TJ ET BT 216.186 282.030 Td /F1 9.8 Tf [(1 \(1.7\))] TJ ET 0.267 0.267 0.267 rg 350.022 307.147 114.853 0.750 re f 350.022 268.372 0.750 39.525 re f 0.271 0.267 0.267 rg BT 355.272 297.292 Td /F1 9.8 Tf [(20 \(90.9\))] TJ ET BT 355.272 289.661 Td /F1 9.8 Tf [(2 \(9.1\))] TJ ET BT 355.272 282.030 Td /F1 9.8 Tf [(0 \(0\))] TJ ET 0.267 0.267 0.267 rg 464.124 307.147 116.751 0.750 re f 464.124 268.372 0.750 39.525 re f 580.125 268.372 0.750 39.525 re f 26.625 268.372 185.061 0.750 re f 26.625 237.229 0.750 31.894 re f 0.271 0.267 0.267 rg BT 31.875 258.517 Td /F5 9.8 Tf [(Marital Status, n \(%\))] TJ ET BT 31.875 250.886 Td /F1 9.8 Tf [(Married)] TJ ET BT 31.875 243.255 Td /F1 9.8 Tf [(Not married)] TJ ET 0.267 0.267 0.267 rg 210.936 268.372 139.836 0.750 re f 210.936 237.229 0.750 31.894 re f 0.271 0.267 0.267 rg BT 216.186 258.517 Td /F1 9.8 Tf [(125 \(91.9\))] TJ ET BT 216.186 250.886 Td /F1 9.8 Tf [(11 \(8.0\))] TJ ET 0.267 0.267 0.267 rg 350.022 268.372 114.853 0.750 re f 350.022 237.229 0.750 31.894 re f 0.271 0.267 0.267 rg BT 355.272 258.517 Td /F1 9.8 Tf [(18 \(94.7\))] TJ ET BT 355.272 250.886 Td /F1 9.8 Tf [(1 \(5.3\))] TJ ET 0.267 0.267 0.267 rg 464.124 268.372 116.751 0.750 re f 464.124 237.229 0.750 31.894 re f 580.125 237.229 0.750 31.894 re f 26.625 237.229 185.061 0.750 re f 26.625 198.454 0.750 39.525 re f 0.271 0.267 0.267 rg BT 31.875 227.374 Td /F5 9.8 Tf [(Education, n \(%\))] TJ ET BT 31.875 219.742 Td /F1 9.8 Tf [(4-year college graduate)] TJ ET BT 31.875 212.111 Td /F1 9.8 Tf [(Post-graduate study)] TJ ET BT 31.875 204.480 Td /F1 9.8 Tf [(Other)] TJ ET 0.267 0.267 0.267 rg 210.936 237.229 139.836 0.750 re f 210.936 198.454 0.750 39.525 re f 0.271 0.267 0.267 rg BT 216.186 227.374 Td /F1 9.8 Tf [(47 \(35.1\))] TJ ET BT 216.186 219.742 Td /F1 9.8 Tf [(74 \(55.2\))] TJ ET BT 216.186 212.111 Td /F1 9.8 Tf [(13 \(9.7\))] TJ ET 0.267 0.267 0.267 rg 350.022 237.229 114.853 0.750 re f 350.022 198.454 0.750 39.525 re f 0.271 0.267 0.267 rg BT 355.272 227.374 Td /F1 9.8 Tf [(10 \(52.6\))] TJ ET BT 355.272 219.742 Td /F1 9.8 Tf [(9 \(47.4\))] TJ ET BT 355.272 212.111 Td /F1 9.8 Tf [(0 \(0\))] TJ ET 0.267 0.267 0.267 rg 464.124 237.229 116.751 0.750 re f 464.124 198.454 0.750 39.525 re f 580.125 198.454 0.750 39.525 re f 26.625 198.454 185.061 0.750 re f 26.625 167.310 0.750 31.894 re f 0.271 0.267 0.267 rg BT 31.875 188.599 Td /F5 9.8 Tf [(Sex, n \(%\))] TJ ET BT 31.875 180.967 Td /F1 9.8 Tf [(Male)] TJ ET BT 31.875 173.336 Td /F1 9.8 Tf [(Female)] TJ ET 0.267 0.267 0.267 rg 210.936 198.454 139.836 0.750 re f 210.936 167.310 0.750 31.894 re f 350.022 198.454 114.853 0.750 re f 350.022 167.310 0.750 31.894 re f 464.124 198.454 116.751 0.750 re f 464.124 167.310 0.750 31.894 re f 580.125 167.310 0.750 31.894 re f 0.271 0.267 0.267 rg BT 469.374 188.599 Td /F1 9.8 Tf [(5 \(22.7\))] TJ ET BT 469.374 180.967 Td /F1 9.8 Tf [(17 \(77.3\))] TJ ET 0.267 0.267 0.267 rg 26.625 167.310 185.061 0.750 re f 26.625 128.535 0.750 39.525 re f 0.271 0.267 0.267 rg BT 31.875 157.455 Td /F5 9.8 Tf [(Role, n \(%\))] TJ ET BT 31.875 149.824 Td /F1 9.8 Tf [(Physician)] TJ ET BT 31.875 142.192 Td /F1 9.8 Tf [(Nurse)] TJ ET BT 31.875 134.561 Td /F1 9.8 Tf [(Other)] TJ ET 0.267 0.267 0.267 rg 210.936 167.310 139.836 0.750 re f 210.936 128.535 0.750 39.525 re f 350.022 167.310 114.853 0.750 re f 350.022 128.535 0.750 39.525 re f 464.124 167.310 116.751 0.750 re f 464.124 128.535 0.750 39.525 re f 580.125 128.535 0.750 39.525 re f 0.271 0.267 0.267 rg BT 469.374 157.455 Td /F1 9.8 Tf [(7 \(31.8\))] TJ ET BT 469.374 149.824 Td /F1 9.8 Tf [(9 \(40.9\))] TJ ET BT 469.374 142.192 Td /F1 9.8 Tf [(6 \(27.2\))] TJ ET 0.267 0.267 0.267 rg 26.625 128.535 185.061 0.750 re f 26.625 112.654 0.750 16.631 re f 0.271 0.267 0.267 rg BT 31.875 118.680 Td /F5 9.8 Tf [(Years in practice, mean \(range\))] TJ ET 0.267 0.267 0.267 rg 210.936 128.535 139.836 0.750 re f 210.936 112.654 0.750 16.631 re f 350.022 128.535 114.853 0.750 re f 350.022 112.654 0.750 16.631 re f 464.124 128.535 116.751 0.750 re f 464.124 112.654 0.750 16.631 re f 580.125 112.654 0.750 16.631 re f 0.271 0.267 0.267 rg BT 469.374 118.680 Td /F1 9.8 Tf [(15.7 \(2-37\))] TJ ET 0.267 0.267 0.267 rg 26.625 112.654 184.686 0.750 re f 26.625 96.772 184.686 0.750 re f 211.311 112.654 139.086 0.750 re f 211.311 96.772 139.086 0.750 re f 350.397 112.654 114.103 0.750 re f 350.397 96.772 114.103 0.750 re f 464.499 112.654 116.376 0.750 re f 464.499 96.772 116.376 0.750 re f 26.625 96.772 0.750 16.631 re f 580.125 96.772 0.750 16.631 re f 0.271 0.267 0.267 rg BT 31.875 102.799 Td /F1 9.8 Tf [(*Total n varies for each characteristic due to missing responses.)] TJ ET BT 26.250 41.874 Td /F1 9.8 Tf [(Twenty-two \(31.0%\) of the sixty-nine parents who declined participation returned decliner questionnaires \()] TJ ET BT 481.975 41.874 Td /F4 9.8 Tf [(Table 1)] TJ ET BT 515.573 41.874 Td /F1 9.8 Tf [(\). The )] TJ ET Q q 0.000 0.000 0.000 rg BT 291.710 19.825 Td /F1 11.0 Tf [(3)] TJ ET BT 25.000 19.825 Td /F1 11.0 Tf [(PLOS Currents Muscular Dystrophy)] TJ ET Q endstream endobj 307 0 obj << /Type /Page /Parent 3 0 R /Contents 308 0 R >> endobj 308 0 obj << /Length 30277 >> stream 0.271 0.267 0.267 rg q 15.000 219.379 577.500 557.621 re W n 0.271 0.267 0.267 rg BT 26.250 767.476 Td /F1 9.8 Tf [(respondents who declined were similar to those who participated. Mothers were the parents who usually completed the )] TJ ET BT 26.250 755.571 Td /F1 9.8 Tf [(questionnaire and most indicated they were married. Approximately 78% of the sampled parents identified themselves as White )] TJ ET BT 26.250 743.667 Td /F1 9.8 Tf [(and 13% as Black or African American. None of the respondents identified themselves as being Hispanic or Latino. All )] TJ ET BT 26.250 731.762 Td /F1 9.8 Tf [(respondents indicated that they had completed either a 4-year college degree or post-graduate study. No statistical differences )] TJ ET BT 26.250 719.857 Td /F1 9.8 Tf [(in the demographics of the participants and decliners were found.)] TJ ET BT 26.250 700.452 Td /F5 9.8 Tf [(Reasons for Participating or Declining Screening)] TJ ET BT 26.250 681.048 Td /F1 9.8 Tf [(Parents whose sons participated in screening and those whose sons did not were asked their three most important reasons for )] TJ ET BT 26.250 669.143 Td /F1 9.8 Tf [(participating in or declining screening. Responses that were reported by a minimum of 10% of participants and decliners are )] TJ ET BT 26.250 657.238 Td /F1 9.8 Tf [(summarized in )] TJ ET BT 92.345 657.238 Td /F4 9.8 Tf [(Table 2)] TJ ET BT 125.944 657.238 Td /F1 9.8 Tf [(. The three most common reasons for accepting screening were: \(1\) I just wanted to know; \(2\) If he )] TJ ET BT 26.250 645.333 Td /F1 9.8 Tf [(had DMD, I wanted to get treatment for my son earlier; and \(3\) I wanted to rule it out to have one less thing to worry about. In )] TJ ET BT 26.250 633.429 Td /F1 9.8 Tf [(contrast, the three most frequently reported reasons for declining screening were: \(1\) My child is healthy; \(2\) No other family )] TJ ET BT 26.250 621.524 Td /F1 9.8 Tf [(member has DMD; and \(3\) There is no real benefit of knowing right now.)] TJ ET q 26.250 584.170 555.000 27.473 re W n 0.271 0.267 0.267 rg BT 26.250 600.654 Td /F1 9.8 Tf [(Table 2. Parents most frequently reported reasons for accepting or declining Duchenne muscular dystrophy screening for their )] TJ ET BT 26.250 586.918 Td /F1 9.8 Tf [(sons)] TJ ET Q 1.000 1.000 1.000 rg 26.250 397.684 555.000 178.986 re f 0.965 0.965 0.965 rg 27.000 563.641 230.538 12.280 re f 0.267 0.267 0.267 rg 26.625 575.545 230.913 0.750 re f 26.625 563.266 0.750 13.030 re f 0.271 0.267 0.267 rg BT 31.500 566.397 Td /F4 9.8 Tf [(Participants \(n = 138\))] TJ ET 0.965 0.965 0.965 rg 257.538 563.641 45.454 12.280 re f 0.267 0.267 0.267 rg 257.538 575.545 45.454 0.750 re f 0.271 0.267 0.267 rg BT 262.038 566.397 Td /F4 9.8 Tf [(%)] TJ ET 0.965 0.965 0.965 rg 302.993 563.641 232.053 12.280 re f 0.267 0.267 0.267 rg 302.993 575.545 232.053 0.750 re f 0.271 0.267 0.267 rg BT 307.493 566.397 Td /F4 9.8 Tf [(Decliners \(n = 22\))] TJ ET 0.965 0.965 0.965 rg 535.046 563.641 45.454 12.280 re f 0.267 0.267 0.267 rg 535.046 575.545 45.829 0.750 re f 580.125 563.266 0.750 13.030 re f 0.271 0.267 0.267 rg BT 539.546 566.397 Td /F4 9.8 Tf [(%)] TJ ET 0.267 0.267 0.267 rg 26.625 563.266 231.288 0.750 re f 26.625 547.384 0.750 16.631 re f 0.271 0.267 0.267 rg BT 31.875 553.411 Td /F1 9.8 Tf [(I just wanted to know.)] TJ ET 0.267 0.267 0.267 rg 257.163 563.266 46.204 0.750 re f 257.163 547.384 0.750 16.631 re f 0.271 0.267 0.267 rg BT 262.413 553.411 Td /F1 9.8 Tf [(54.3)] TJ ET 0.267 0.267 0.267 rg 302.618 563.266 232.803 0.750 re f 302.618 547.384 0.750 16.631 re f 0.271 0.267 0.267 rg BT 307.868 553.411 Td /F1 9.8 Tf [(My child is healthy)] TJ ET 0.267 0.267 0.267 rg 534.671 563.266 46.204 0.750 re f 534.671 547.384 0.750 16.631 re f 580.125 547.384 0.750 16.631 re f 0.271 0.267 0.267 rg BT 539.921 553.411 Td /F1 9.8 Tf [(63.6)] TJ ET 0.267 0.267 0.267 rg 26.625 547.384 231.288 0.750 re f 26.625 523.872 0.750 24.263 re f 0.271 0.267 0.267 rg BT 31.875 537.529 Td /F1 9.8 Tf [(If he had DMD, I wanted to get treatment for my )] TJ ET BT 31.875 529.898 Td /F1 9.8 Tf [(son earlier.)] TJ ET 0.267 0.267 0.267 rg 257.163 547.384 46.204 0.750 re f 257.163 523.872 0.750 24.263 re f 0.271 0.267 0.267 rg BT 262.413 537.529 Td /F1 9.8 Tf [(42.0)] TJ ET 0.267 0.267 0.267 rg 302.618 547.384 232.803 0.750 re f 302.618 523.872 0.750 24.263 re f 0.271 0.267 0.267 rg BT 307.868 537.529 Td /F1 9.8 Tf [(No other family member with DMD.)] TJ ET 0.267 0.267 0.267 rg 534.671 547.384 46.204 0.750 re f 534.671 523.872 0.750 24.263 re f 580.125 523.872 0.750 24.263 re f 0.271 0.267 0.267 rg BT 539.921 537.529 Td /F1 9.8 Tf [(45.5)] TJ ET 0.267 0.267 0.267 rg 26.625 523.872 231.288 0.750 re f 26.625 500.359 0.750 24.262 re f 0.271 0.267 0.267 rg BT 31.875 514.017 Td /F1 9.8 Tf [(I wanted to rule it out to have one less thing to )] TJ ET BT 31.875 506.386 Td /F1 9.8 Tf [(worry about.)] TJ ET 0.267 0.267 0.267 rg 257.163 523.872 46.204 0.750 re f 257.163 500.359 0.750 24.262 re f 0.271 0.267 0.267 rg BT 262.413 514.017 Td /F1 9.8 Tf [(31.2)] TJ ET 0.267 0.267 0.267 rg 302.618 523.872 232.803 0.750 re f 302.618 500.359 0.750 24.262 re f 0.271 0.267 0.267 rg BT 307.868 514.017 Td /F1 9.8 Tf [(There is no real benefit of knowing right now.)] TJ ET 0.267 0.267 0.267 rg 534.671 523.872 46.204 0.750 re f 534.671 500.359 0.750 24.262 re f 580.125 500.359 0.750 24.262 re f 0.271 0.267 0.267 rg BT 539.921 514.017 Td /F1 9.8 Tf [(22.7)] TJ ET 0.267 0.267 0.267 rg 26.625 500.359 231.288 0.750 re f 26.625 476.847 0.750 24.263 re f 0.271 0.267 0.267 rg BT 31.875 490.504 Td /F1 9.8 Tf [(If he had DMD, I wanted to be able to make plans )] TJ ET BT 31.875 482.873 Td /F1 9.8 Tf [(for the future.)] TJ ET 0.267 0.267 0.267 rg 257.163 500.359 46.204 0.750 re f 257.163 476.847 0.750 24.263 re f 0.271 0.267 0.267 rg BT 262.413 490.504 Td /F1 9.8 Tf [(23.2)] TJ ET 0.267 0.267 0.267 rg 302.618 500.359 232.803 0.750 re f 302.618 476.847 0.750 24.263 re f 0.271 0.267 0.267 rg BT 307.868 490.504 Td /F1 9.8 Tf [(I would not want the the stress of knowing before )] TJ ET BT 307.868 482.873 Td /F1 9.8 Tf [(symptoms start.)] TJ ET 0.267 0.267 0.267 rg 534.671 500.359 46.204 0.750 re f 534.671 476.847 0.750 24.263 re f 580.125 476.847 0.750 24.263 re f 0.271 0.267 0.267 rg BT 539.921 490.504 Td /F1 9.8 Tf [(18.2)] TJ ET 0.267 0.267 0.267 rg 26.625 476.847 231.288 0.750 re f 26.625 453.334 0.750 24.263 re f 0.271 0.267 0.267 rg BT 31.875 466.992 Td /F1 9.8 Tf [(If he had DMD, I wanted to mentally prepare )] TJ ET BT 31.875 459.361 Td /F1 9.8 Tf [(myself.)] TJ ET 0.267 0.267 0.267 rg 257.163 476.847 46.204 0.750 re f 257.163 453.334 0.750 24.263 re f 0.271 0.267 0.267 rg BT 262.413 466.992 Td /F1 9.8 Tf [(19.6)] TJ ET 0.267 0.267 0.267 rg 302.618 476.847 232.803 0.750 re f 302.618 453.334 0.750 24.263 re f 0.271 0.267 0.267 rg BT 307.868 466.992 Td /F1 9.8 Tf [(Other*: Risk for false positive.)] TJ ET 0.267 0.267 0.267 rg 534.671 476.847 46.204 0.750 re f 534.671 453.334 0.750 24.263 re f 580.125 453.334 0.750 24.263 re f 0.271 0.267 0.267 rg BT 539.921 466.992 Td /F1 9.8 Tf [(18.2)] TJ ET 0.267 0.267 0.267 rg 26.625 453.334 231.288 0.750 re f 26.625 437.453 0.750 16.631 re f 0.271 0.267 0.267 rg BT 31.875 443.479 Td /F1 9.8 Tf [(Other*: To benefit others/help with research)] TJ ET 0.267 0.267 0.267 rg 257.163 453.334 46.204 0.750 re f 257.163 437.453 0.750 16.631 re f 0.271 0.267 0.267 rg BT 262.413 443.479 Td /F1 9.8 Tf [(19.6)] TJ ET 0.267 0.267 0.267 rg 302.618 453.334 232.803 0.750 re f 302.618 437.453 0.750 16.631 re f 0.271 0.267 0.267 rg BT 307.868 443.479 Td /F1 9.8 Tf [(Right now there is no cure or proven treatement.)] TJ ET 0.267 0.267 0.267 rg 534.671 453.334 46.204 0.750 re f 534.671 437.453 0.750 16.631 re f 580.125 437.453 0.750 16.631 re f 0.271 0.267 0.267 rg BT 539.921 443.479 Td /F1 9.8 Tf [(13.6)] TJ ET 0.267 0.267 0.267 rg 26.625 437.453 231.288 0.750 re f 26.625 413.941 0.750 24.263 re f 257.163 437.453 46.204 0.750 re f 257.163 413.941 0.750 24.263 re f 302.618 437.453 232.803 0.750 re f 302.618 413.941 0.750 24.263 re f 0.271 0.267 0.267 rg BT 307.868 427.598 Td /F1 9.8 Tf [(Other*: Do not want another needle stick or )] TJ ET BT 307.868 419.967 Td /F1 9.8 Tf [(additional blood taken.)] TJ ET 0.267 0.267 0.267 rg 534.671 437.453 46.204 0.750 re f 534.671 413.941 0.750 24.263 re f 580.125 413.941 0.750 24.263 re f 0.271 0.267 0.267 rg BT 539.921 427.598 Td /F1 9.8 Tf [(13.6)] TJ ET 0.267 0.267 0.267 rg 26.625 413.941 230.913 0.750 re f 26.625 398.059 230.913 0.750 re f 257.538 413.941 45.454 0.750 re f 257.538 398.059 45.454 0.750 re f 302.993 413.941 232.053 0.750 re f 302.993 398.059 232.053 0.750 re f 535.046 413.941 45.829 0.750 re f 535.046 398.059 45.829 0.750 re f 26.625 398.059 0.750 16.631 re f 580.125 398.059 0.750 16.631 re f 0.271 0.267 0.267 rg BT 31.875 404.086 Td /F1 9.8 Tf [(*Answers written in by questionnaire respondents.)] TJ ET BT 26.250 343.161 Td /F5 9.8 Tf [(Evaluating Consent)] TJ ET BT 26.250 323.756 Td /F1 9.8 Tf [(Questionnaire results indicated that parents were able to make an informed decision about DMD screening when receiving )] TJ ET BT 26.250 311.851 Td /F1 9.8 Tf [(information in the pediatric clinic \()] TJ ET BT 170.921 311.851 Td /F4 9.8 Tf [(Table 3)] TJ ET BT 204.519 311.851 Td /F1 9.8 Tf [(\). Although about 20% of parents did not feel they had much time to review the )] TJ ET BT 26.250 299.946 Td /F1 9.8 Tf [(materials, over 95% felt they understood the written information at least well enough or better and about 70% felt the written )] TJ ET BT 26.250 288.042 Td /F1 9.8 Tf [(information was helpful to them in making a decision about participating. Nearly 95% of participants also reported that whoever )] TJ ET BT 26.250 276.137 Td /F1 9.8 Tf [(spoke with them about screening was at least somewhat helpful in explaining the DMD screening program and they felt they )] TJ ET BT 26.250 264.232 Td /F1 9.8 Tf [(were given enough time to ask questions.)] TJ ET Q q 15.000 219.379 577.500 557.621 re W n 0.271 0.267 0.267 rg BT 26.250 767.476 Td /F1 9.8 Tf [(respondents who declined were similar to those who participated. Mothers were the parents who usually completed the )] TJ ET BT 26.250 755.571 Td /F1 9.8 Tf [(questionnaire and most indicated they were married. Approximately 78% of the sampled parents identified themselves as White )] TJ ET BT 26.250 743.667 Td /F1 9.8 Tf [(and 13% as Black or African American. None of the respondents identified themselves as being Hispanic or Latino. All )] TJ ET BT 26.250 731.762 Td /F1 9.8 Tf [(respondents indicated that they had completed either a 4-year college degree or post-graduate study. No statistical differences )] TJ ET BT 26.250 719.857 Td /F1 9.8 Tf [(in the demographics of the participants and decliners were found.)] TJ ET BT 26.250 700.452 Td /F5 9.8 Tf [(Reasons for Participating or Declining Screening)] TJ ET BT 26.250 681.048 Td /F1 9.8 Tf [(Parents whose sons participated in screening and those whose sons did not were asked their three most important reasons for )] TJ ET BT 26.250 669.143 Td /F1 9.8 Tf [(participating in or declining screening. Responses that were reported by a minimum of 10% of participants and decliners are )] TJ ET BT 26.250 657.238 Td /F1 9.8 Tf [(summarized in )] TJ ET BT 92.345 657.238 Td /F4 9.8 Tf [(Table 2)] TJ ET BT 125.944 657.238 Td /F1 9.8 Tf [(. The three most common reasons for accepting screening were: \(1\) I just wanted to know; \(2\) If he )] TJ ET BT 26.250 645.333 Td /F1 9.8 Tf [(had DMD, I wanted to get treatment for my son earlier; and \(3\) I wanted to rule it out to have one less thing to worry about. In )] TJ ET BT 26.250 633.429 Td /F1 9.8 Tf [(contrast, the three most frequently reported reasons for declining screening were: \(1\) My child is healthy; \(2\) No other family )] TJ ET BT 26.250 621.524 Td /F1 9.8 Tf [(member has DMD; and \(3\) There is no real benefit of knowing right now.)] TJ ET q 26.250 584.170 555.000 27.473 re W n 0.271 0.267 0.267 rg BT 26.250 600.654 Td /F1 9.8 Tf [(Table 2. Parents most frequently reported reasons for accepting or declining Duchenne muscular dystrophy screening for their )] TJ ET BT 26.250 586.918 Td /F1 9.8 Tf [(sons)] TJ ET Q 1.000 1.000 1.000 rg 26.250 397.684 555.000 178.986 re f 0.965 0.965 0.965 rg 27.000 563.641 230.538 12.280 re f 0.267 0.267 0.267 rg 26.625 575.545 230.913 0.750 re f 26.625 563.266 0.750 13.030 re f 0.271 0.267 0.267 rg BT 31.500 566.397 Td /F4 9.8 Tf [(Participants \(n = 138\))] TJ ET 0.965 0.965 0.965 rg 257.538 563.641 45.454 12.280 re f 0.267 0.267 0.267 rg 257.538 575.545 45.454 0.750 re f 0.271 0.267 0.267 rg BT 262.038 566.397 Td /F4 9.8 Tf [(%)] TJ ET 0.965 0.965 0.965 rg 302.993 563.641 232.053 12.280 re f 0.267 0.267 0.267 rg 302.993 575.545 232.053 0.750 re f 0.271 0.267 0.267 rg BT 307.493 566.397 Td /F4 9.8 Tf [(Decliners \(n = 22\))] TJ ET 0.965 0.965 0.965 rg 535.046 563.641 45.454 12.280 re f 0.267 0.267 0.267 rg 535.046 575.545 45.829 0.750 re f 580.125 563.266 0.750 13.030 re f 0.271 0.267 0.267 rg BT 539.546 566.397 Td /F4 9.8 Tf [(%)] TJ ET 0.267 0.267 0.267 rg 26.625 563.266 231.288 0.750 re f 26.625 547.384 0.750 16.631 re f 0.271 0.267 0.267 rg BT 31.875 553.411 Td /F1 9.8 Tf [(I just wanted to know.)] TJ ET 0.267 0.267 0.267 rg 257.163 563.266 46.204 0.750 re f 257.163 547.384 0.750 16.631 re f 0.271 0.267 0.267 rg BT 262.413 553.411 Td /F1 9.8 Tf [(54.3)] TJ ET 0.267 0.267 0.267 rg 302.618 563.266 232.803 0.750 re f 302.618 547.384 0.750 16.631 re f 0.271 0.267 0.267 rg BT 307.868 553.411 Td /F1 9.8 Tf [(My child is healthy)] TJ ET 0.267 0.267 0.267 rg 534.671 563.266 46.204 0.750 re f 534.671 547.384 0.750 16.631 re f 580.125 547.384 0.750 16.631 re f 0.271 0.267 0.267 rg BT 539.921 553.411 Td /F1 9.8 Tf [(63.6)] TJ ET 0.267 0.267 0.267 rg 26.625 547.384 231.288 0.750 re f 26.625 523.872 0.750 24.263 re f 0.271 0.267 0.267 rg BT 31.875 537.529 Td /F1 9.8 Tf [(If he had DMD, I wanted to get treatment for my )] TJ ET BT 31.875 529.898 Td /F1 9.8 Tf [(son earlier.)] TJ ET 0.267 0.267 0.267 rg 257.163 547.384 46.204 0.750 re f 257.163 523.872 0.750 24.263 re f 0.271 0.267 0.267 rg BT 262.413 537.529 Td /F1 9.8 Tf [(42.0)] TJ ET 0.267 0.267 0.267 rg 302.618 547.384 232.803 0.750 re f 302.618 523.872 0.750 24.263 re f 0.271 0.267 0.267 rg BT 307.868 537.529 Td /F1 9.8 Tf [(No other family member with DMD.)] TJ ET 0.267 0.267 0.267 rg 534.671 547.384 46.204 0.750 re f 534.671 523.872 0.750 24.263 re f 580.125 523.872 0.750 24.263 re f 0.271 0.267 0.267 rg BT 539.921 537.529 Td /F1 9.8 Tf [(45.5)] TJ ET 0.267 0.267 0.267 rg 26.625 523.872 231.288 0.750 re f 26.625 500.359 0.750 24.262 re f 0.271 0.267 0.267 rg BT 31.875 514.017 Td /F1 9.8 Tf [(I wanted to rule it out to have one less thing to )] TJ ET BT 31.875 506.386 Td /F1 9.8 Tf [(worry about.)] TJ ET 0.267 0.267 0.267 rg 257.163 523.872 46.204 0.750 re f 257.163 500.359 0.750 24.262 re f 0.271 0.267 0.267 rg BT 262.413 514.017 Td /F1 9.8 Tf [(31.2)] TJ ET 0.267 0.267 0.267 rg 302.618 523.872 232.803 0.750 re f 302.618 500.359 0.750 24.262 re f 0.271 0.267 0.267 rg BT 307.868 514.017 Td /F1 9.8 Tf [(There is no real benefit of knowing right now.)] TJ ET 0.267 0.267 0.267 rg 534.671 523.872 46.204 0.750 re f 534.671 500.359 0.750 24.262 re f 580.125 500.359 0.750 24.262 re f 0.271 0.267 0.267 rg BT 539.921 514.017 Td /F1 9.8 Tf [(22.7)] TJ ET 0.267 0.267 0.267 rg 26.625 500.359 231.288 0.750 re f 26.625 476.847 0.750 24.263 re f 0.271 0.267 0.267 rg BT 31.875 490.504 Td /F1 9.8 Tf [(If he had DMD, I wanted to be able to make plans )] TJ ET BT 31.875 482.873 Td /F1 9.8 Tf [(for the future.)] TJ ET 0.267 0.267 0.267 rg 257.163 500.359 46.204 0.750 re f 257.163 476.847 0.750 24.263 re f 0.271 0.267 0.267 rg BT 262.413 490.504 Td /F1 9.8 Tf [(23.2)] TJ ET 0.267 0.267 0.267 rg 302.618 500.359 232.803 0.750 re f 302.618 476.847 0.750 24.263 re f 0.271 0.267 0.267 rg BT 307.868 490.504 Td /F1 9.8 Tf [(I would not want the the stress of knowing before )] TJ ET BT 307.868 482.873 Td /F1 9.8 Tf [(symptoms start.)] TJ ET 0.267 0.267 0.267 rg 534.671 500.359 46.204 0.750 re f 534.671 476.847 0.750 24.263 re f 580.125 476.847 0.750 24.263 re f 0.271 0.267 0.267 rg BT 539.921 490.504 Td /F1 9.8 Tf [(18.2)] TJ ET 0.267 0.267 0.267 rg 26.625 476.847 231.288 0.750 re f 26.625 453.334 0.750 24.263 re f 0.271 0.267 0.267 rg BT 31.875 466.992 Td /F1 9.8 Tf [(If he had DMD, I wanted to mentally prepare )] TJ ET BT 31.875 459.361 Td /F1 9.8 Tf [(myself.)] TJ ET 0.267 0.267 0.267 rg 257.163 476.847 46.204 0.750 re f 257.163 453.334 0.750 24.263 re f 0.271 0.267 0.267 rg BT 262.413 466.992 Td /F1 9.8 Tf [(19.6)] TJ ET 0.267 0.267 0.267 rg 302.618 476.847 232.803 0.750 re f 302.618 453.334 0.750 24.263 re f 0.271 0.267 0.267 rg BT 307.868 466.992 Td /F1 9.8 Tf [(Other*: Risk for false positive.)] TJ ET 0.267 0.267 0.267 rg 534.671 476.847 46.204 0.750 re f 534.671 453.334 0.750 24.263 re f 580.125 453.334 0.750 24.263 re f 0.271 0.267 0.267 rg BT 539.921 466.992 Td /F1 9.8 Tf [(18.2)] TJ ET 0.267 0.267 0.267 rg 26.625 453.334 231.288 0.750 re f 26.625 437.453 0.750 16.631 re f 0.271 0.267 0.267 rg BT 31.875 443.479 Td /F1 9.8 Tf [(Other*: To benefit others/help with research)] TJ ET 0.267 0.267 0.267 rg 257.163 453.334 46.204 0.750 re f 257.163 437.453 0.750 16.631 re f 0.271 0.267 0.267 rg BT 262.413 443.479 Td /F1 9.8 Tf [(19.6)] TJ ET 0.267 0.267 0.267 rg 302.618 453.334 232.803 0.750 re f 302.618 437.453 0.750 16.631 re f 0.271 0.267 0.267 rg BT 307.868 443.479 Td /F1 9.8 Tf [(Right now there is no cure or proven treatement.)] TJ ET 0.267 0.267 0.267 rg 534.671 453.334 46.204 0.750 re f 534.671 437.453 0.750 16.631 re f 580.125 437.453 0.750 16.631 re f 0.271 0.267 0.267 rg BT 539.921 443.479 Td /F1 9.8 Tf [(13.6)] TJ ET 0.267 0.267 0.267 rg 26.625 437.453 231.288 0.750 re f 26.625 413.941 0.750 24.263 re f 257.163 437.453 46.204 0.750 re f 257.163 413.941 0.750 24.263 re f 302.618 437.453 232.803 0.750 re f 302.618 413.941 0.750 24.263 re f 0.271 0.267 0.267 rg BT 307.868 427.598 Td /F1 9.8 Tf [(Other*: Do not want another needle stick or )] TJ ET BT 307.868 419.967 Td /F1 9.8 Tf [(additional blood taken.)] TJ ET 0.267 0.267 0.267 rg 534.671 437.453 46.204 0.750 re f 534.671 413.941 0.750 24.263 re f 580.125 413.941 0.750 24.263 re f 0.271 0.267 0.267 rg BT 539.921 427.598 Td /F1 9.8 Tf [(13.6)] TJ ET 0.267 0.267 0.267 rg 26.625 413.941 230.913 0.750 re f 26.625 398.059 230.913 0.750 re f 257.538 413.941 45.454 0.750 re f 257.538 398.059 45.454 0.750 re f 302.993 413.941 232.053 0.750 re f 302.993 398.059 232.053 0.750 re f 535.046 413.941 45.829 0.750 re f 535.046 398.059 45.829 0.750 re f 26.625 398.059 0.750 16.631 re f 580.125 398.059 0.750 16.631 re f 0.271 0.267 0.267 rg BT 31.875 404.086 Td /F1 9.8 Tf [(*Answers written in by questionnaire respondents.)] TJ ET BT 26.250 343.161 Td /F5 9.8 Tf [(Evaluating Consent)] TJ ET BT 26.250 323.756 Td /F1 9.8 Tf [(Questionnaire results indicated that parents were able to make an informed decision about DMD screening when receiving )] TJ ET BT 26.250 311.851 Td /F1 9.8 Tf [(information in the pediatric clinic \()] TJ ET BT 170.921 311.851 Td /F4 9.8 Tf [(Table 3)] TJ ET BT 204.519 311.851 Td /F1 9.8 Tf [(\). Although about 20% of parents did not feel they had much time to review the )] TJ ET BT 26.250 299.946 Td /F1 9.8 Tf [(materials, over 95% felt they understood the written information at least well enough or better and about 70% felt the written )] TJ ET BT 26.250 288.042 Td /F1 9.8 Tf [(information was helpful to them in making a decision about participating. Nearly 95% of participants also reported that whoever )] TJ ET BT 26.250 276.137 Td /F1 9.8 Tf [(spoke with them about screening was at least somewhat helpful in explaining the DMD screening program and they felt they )] TJ ET BT 26.250 264.232 Td /F1 9.8 Tf [(were given enough time to ask questions.)] TJ ET Q q 15.000 219.379 577.500 557.621 re W n 0.271 0.267 0.267 rg BT 26.250 767.476 Td /F1 9.8 Tf [(respondents who declined were similar to those who participated. Mothers were the parents who usually completed the )] TJ ET BT 26.250 755.571 Td /F1 9.8 Tf [(questionnaire and most indicated they were married. Approximately 78% of the sampled parents identified themselves as White )] TJ ET BT 26.250 743.667 Td /F1 9.8 Tf [(and 13% as Black or African American. None of the respondents identified themselves as being Hispanic or Latino. All )] TJ ET BT 26.250 731.762 Td /F1 9.8 Tf [(respondents indicated that they had completed either a 4-year college degree or post-graduate study. No statistical differences )] TJ ET BT 26.250 719.857 Td /F1 9.8 Tf [(in the demographics of the participants and decliners were found.)] TJ ET BT 26.250 700.452 Td /F5 9.8 Tf [(Reasons for Participating or Declining Screening)] TJ ET BT 26.250 681.048 Td /F1 9.8 Tf [(Parents whose sons participated in screening and those whose sons did not were asked their three most important reasons for )] TJ ET BT 26.250 669.143 Td /F1 9.8 Tf [(participating in or declining screening. Responses that were reported by a minimum of 10% of participants and decliners are )] TJ ET BT 26.250 657.238 Td /F1 9.8 Tf [(summarized in )] TJ ET BT 92.345 657.238 Td /F4 9.8 Tf [(Table 2)] TJ ET BT 125.944 657.238 Td /F1 9.8 Tf [(. The three most common reasons for accepting screening were: \(1\) I just wanted to know; \(2\) If he )] TJ ET BT 26.250 645.333 Td /F1 9.8 Tf [(had DMD, I wanted to get treatment for my son earlier; and \(3\) I wanted to rule it out to have one less thing to worry about. In )] TJ ET BT 26.250 633.429 Td /F1 9.8 Tf [(contrast, the three most frequently reported reasons for declining screening were: \(1\) My child is healthy; \(2\) No other family )] TJ ET BT 26.250 621.524 Td /F1 9.8 Tf [(member has DMD; and \(3\) There is no real benefit of knowing right now.)] TJ ET q 26.250 584.170 555.000 27.473 re W n 0.271 0.267 0.267 rg BT 26.250 600.654 Td /F1 9.8 Tf [(Table 2. Parents most frequently reported reasons for accepting or declining Duchenne muscular dystrophy screening for their )] TJ ET BT 26.250 586.918 Td /F1 9.8 Tf [(sons)] TJ ET Q 1.000 1.000 1.000 rg 26.250 397.684 555.000 178.986 re f 0.965 0.965 0.965 rg 27.000 563.641 230.538 12.280 re f 0.267 0.267 0.267 rg 26.625 575.545 230.913 0.750 re f 26.625 563.266 0.750 13.030 re f 0.271 0.267 0.267 rg BT 31.500 566.397 Td /F4 9.8 Tf [(Participants \(n = 138\))] TJ ET 0.965 0.965 0.965 rg 257.538 563.641 45.454 12.280 re f 0.267 0.267 0.267 rg 257.538 575.545 45.454 0.750 re f 0.271 0.267 0.267 rg BT 262.038 566.397 Td /F4 9.8 Tf [(%)] TJ ET 0.965 0.965 0.965 rg 302.993 563.641 232.053 12.280 re f 0.267 0.267 0.267 rg 302.993 575.545 232.053 0.750 re f 0.271 0.267 0.267 rg BT 307.493 566.397 Td /F4 9.8 Tf [(Decliners \(n = 22\))] TJ ET 0.965 0.965 0.965 rg 535.046 563.641 45.454 12.280 re f 0.267 0.267 0.267 rg 535.046 575.545 45.829 0.750 re f 580.125 563.266 0.750 13.030 re f 0.271 0.267 0.267 rg BT 539.546 566.397 Td /F4 9.8 Tf [(%)] TJ ET 0.267 0.267 0.267 rg 26.625 563.266 231.288 0.750 re f 26.625 547.384 0.750 16.631 re f 0.271 0.267 0.267 rg BT 31.875 553.411 Td /F1 9.8 Tf [(I just wanted to know.)] TJ ET 0.267 0.267 0.267 rg 257.163 563.266 46.204 0.750 re f 257.163 547.384 0.750 16.631 re f 0.271 0.267 0.267 rg BT 262.413 553.411 Td /F1 9.8 Tf [(54.3)] TJ ET 0.267 0.267 0.267 rg 302.618 563.266 232.803 0.750 re f 302.618 547.384 0.750 16.631 re f 0.271 0.267 0.267 rg BT 307.868 553.411 Td /F1 9.8 Tf [(My child is healthy)] TJ ET 0.267 0.267 0.267 rg 534.671 563.266 46.204 0.750 re f 534.671 547.384 0.750 16.631 re f 580.125 547.384 0.750 16.631 re f 0.271 0.267 0.267 rg BT 539.921 553.411 Td /F1 9.8 Tf [(63.6)] TJ ET 0.267 0.267 0.267 rg 26.625 547.384 231.288 0.750 re f 26.625 523.872 0.750 24.263 re f 0.271 0.267 0.267 rg BT 31.875 537.529 Td /F1 9.8 Tf [(If he had DMD, I wanted to get treatment for my )] TJ ET BT 31.875 529.898 Td /F1 9.8 Tf [(son earlier.)] TJ ET 0.267 0.267 0.267 rg 257.163 547.384 46.204 0.750 re f 257.163 523.872 0.750 24.263 re f 0.271 0.267 0.267 rg BT 262.413 537.529 Td /F1 9.8 Tf [(42.0)] TJ ET 0.267 0.267 0.267 rg 302.618 547.384 232.803 0.750 re f 302.618 523.872 0.750 24.263 re f 0.271 0.267 0.267 rg BT 307.868 537.529 Td /F1 9.8 Tf [(No other family member with DMD.)] TJ ET 0.267 0.267 0.267 rg 534.671 547.384 46.204 0.750 re f 534.671 523.872 0.750 24.263 re f 580.125 523.872 0.750 24.263 re f 0.271 0.267 0.267 rg BT 539.921 537.529 Td /F1 9.8 Tf [(45.5)] TJ ET 0.267 0.267 0.267 rg 26.625 523.872 231.288 0.750 re f 26.625 500.359 0.750 24.262 re f 0.271 0.267 0.267 rg BT 31.875 514.017 Td /F1 9.8 Tf [(I wanted to rule it out to have one less thing to )] TJ ET BT 31.875 506.386 Td /F1 9.8 Tf [(worry about.)] TJ ET 0.267 0.267 0.267 rg 257.163 523.872 46.204 0.750 re f 257.163 500.359 0.750 24.262 re f 0.271 0.267 0.267 rg BT 262.413 514.017 Td /F1 9.8 Tf [(31.2)] TJ ET 0.267 0.267 0.267 rg 302.618 523.872 232.803 0.750 re f 302.618 500.359 0.750 24.262 re f 0.271 0.267 0.267 rg BT 307.868 514.017 Td /F1 9.8 Tf [(There is no real benefit of knowing right now.)] TJ ET 0.267 0.267 0.267 rg 534.671 523.872 46.204 0.750 re f 534.671 500.359 0.750 24.262 re f 580.125 500.359 0.750 24.262 re f 0.271 0.267 0.267 rg BT 539.921 514.017 Td /F1 9.8 Tf [(22.7)] TJ ET 0.267 0.267 0.267 rg 26.625 500.359 231.288 0.750 re f 26.625 476.847 0.750 24.263 re f 0.271 0.267 0.267 rg BT 31.875 490.504 Td /F1 9.8 Tf [(If he had DMD, I wanted to be able to make plans )] TJ ET BT 31.875 482.873 Td /F1 9.8 Tf [(for the future.)] TJ ET 0.267 0.267 0.267 rg 257.163 500.359 46.204 0.750 re f 257.163 476.847 0.750 24.263 re f 0.271 0.267 0.267 rg BT 262.413 490.504 Td /F1 9.8 Tf [(23.2)] TJ ET 0.267 0.267 0.267 rg 302.618 500.359 232.803 0.750 re f 302.618 476.847 0.750 24.263 re f 0.271 0.267 0.267 rg BT 307.868 490.504 Td /F1 9.8 Tf [(I would not want the the stress of knowing before )] TJ ET BT 307.868 482.873 Td /F1 9.8 Tf [(symptoms start.)] TJ ET 0.267 0.267 0.267 rg 534.671 500.359 46.204 0.750 re f 534.671 476.847 0.750 24.263 re f 580.125 476.847 0.750 24.263 re f 0.271 0.267 0.267 rg BT 539.921 490.504 Td /F1 9.8 Tf [(18.2)] TJ ET 0.267 0.267 0.267 rg 26.625 476.847 231.288 0.750 re f 26.625 453.334 0.750 24.263 re f 0.271 0.267 0.267 rg BT 31.875 466.992 Td /F1 9.8 Tf [(If he had DMD, I wanted to mentally prepare )] TJ ET BT 31.875 459.361 Td /F1 9.8 Tf [(myself.)] TJ ET 0.267 0.267 0.267 rg 257.163 476.847 46.204 0.750 re f 257.163 453.334 0.750 24.263 re f 0.271 0.267 0.267 rg BT 262.413 466.992 Td /F1 9.8 Tf [(19.6)] TJ ET 0.267 0.267 0.267 rg 302.618 476.847 232.803 0.750 re f 302.618 453.334 0.750 24.263 re f 0.271 0.267 0.267 rg BT 307.868 466.992 Td /F1 9.8 Tf [(Other*: Risk for false positive.)] TJ ET 0.267 0.267 0.267 rg 534.671 476.847 46.204 0.750 re f 534.671 453.334 0.750 24.263 re f 580.125 453.334 0.750 24.263 re f 0.271 0.267 0.267 rg BT 539.921 466.992 Td /F1 9.8 Tf [(18.2)] TJ ET 0.267 0.267 0.267 rg 26.625 453.334 231.288 0.750 re f 26.625 437.453 0.750 16.631 re f 0.271 0.267 0.267 rg BT 31.875 443.479 Td /F1 9.8 Tf [(Other*: To benefit others/help with research)] TJ ET 0.267 0.267 0.267 rg 257.163 453.334 46.204 0.750 re f 257.163 437.453 0.750 16.631 re f 0.271 0.267 0.267 rg BT 262.413 443.479 Td /F1 9.8 Tf [(19.6)] TJ ET 0.267 0.267 0.267 rg 302.618 453.334 232.803 0.750 re f 302.618 437.453 0.750 16.631 re f 0.271 0.267 0.267 rg BT 307.868 443.479 Td /F1 9.8 Tf [(Right now there is no cure or proven treatement.)] TJ ET 0.267 0.267 0.267 rg 534.671 453.334 46.204 0.750 re f 534.671 437.453 0.750 16.631 re f 580.125 437.453 0.750 16.631 re f 0.271 0.267 0.267 rg BT 539.921 443.479 Td /F1 9.8 Tf [(13.6)] TJ ET 0.267 0.267 0.267 rg 26.625 437.453 231.288 0.750 re f 26.625 413.941 0.750 24.263 re f 257.163 437.453 46.204 0.750 re f 257.163 413.941 0.750 24.263 re f 302.618 437.453 232.803 0.750 re f 302.618 413.941 0.750 24.263 re f 0.271 0.267 0.267 rg BT 307.868 427.598 Td /F1 9.8 Tf [(Other*: Do not want another needle stick or )] TJ ET BT 307.868 419.967 Td /F1 9.8 Tf [(additional blood taken.)] TJ ET 0.267 0.267 0.267 rg 534.671 437.453 46.204 0.750 re f 534.671 413.941 0.750 24.263 re f 580.125 413.941 0.750 24.263 re f 0.271 0.267 0.267 rg BT 539.921 427.598 Td /F1 9.8 Tf [(13.6)] TJ ET 0.267 0.267 0.267 rg 26.625 413.941 230.913 0.750 re f 26.625 398.059 230.913 0.750 re f 257.538 413.941 45.454 0.750 re f 257.538 398.059 45.454 0.750 re f 302.993 413.941 232.053 0.750 re f 302.993 398.059 232.053 0.750 re f 535.046 413.941 45.829 0.750 re f 535.046 398.059 45.829 0.750 re f 26.625 398.059 0.750 16.631 re f 580.125 398.059 0.750 16.631 re f 0.271 0.267 0.267 rg BT 31.875 404.086 Td /F1 9.8 Tf [(*Answers written in by questionnaire respondents.)] TJ ET BT 26.250 343.161 Td /F5 9.8 Tf [(Evaluating Consent)] TJ ET BT 26.250 323.756 Td /F1 9.8 Tf [(Questionnaire results indicated that parents were able to make an informed decision about DMD screening when receiving )] TJ ET BT 26.250 311.851 Td /F1 9.8 Tf [(information in the pediatric clinic \()] TJ ET BT 170.921 311.851 Td /F4 9.8 Tf [(Table 3)] TJ ET BT 204.519 311.851 Td /F1 9.8 Tf [(\). Although about 20% of parents did not feel they had much time to review the )] TJ ET BT 26.250 299.946 Td /F1 9.8 Tf [(materials, over 95% felt they understood the written information at least well enough or better and about 70% felt the written )] TJ ET BT 26.250 288.042 Td /F1 9.8 Tf [(information was helpful to them in making a decision about participating. Nearly 95% of participants also reported that whoever )] TJ ET BT 26.250 276.137 Td /F1 9.8 Tf [(spoke with them about screening was at least somewhat helpful in explaining the DMD screening program and they felt they )] TJ ET BT 26.250 264.232 Td /F1 9.8 Tf [(were given enough time to ask questions.)] TJ ET Q q 0.000 0.000 0.000 rg BT 291.710 19.825 Td /F1 11.0 Tf [(4)] TJ ET BT 25.000 19.825 Td /F1 11.0 Tf [(PLOS Currents Muscular Dystrophy)] TJ ET Q endstream endobj 309 0 obj << /Type /Page /Parent 3 0 R /Contents 310 0 R >> endobj 310 0 obj << /Length 37705 >> stream 0.271 0.267 0.267 rg q 15.000 43.681 577.500 733.319 re W n q 26.250 749.527 555.000 27.473 re W n 0.271 0.267 0.267 rg BT 26.250 766.011 Td /F1 9.8 Tf [(Table 3. Questions and respondent answers used to evaluate parents perceived usefulness of the information they received )] TJ ET BT 26.250 752.275 Td /F1 9.8 Tf [(and their knowledge of Duchenne muscular dystrophy screening)] TJ ET Q 1.000 1.000 1.000 rg 26.250 234.633 555.000 507.395 re f 0.965 0.965 0.965 rg 27.000 728.998 252.253 12.280 re f 0.267 0.267 0.267 rg 26.625 740.902 252.628 0.750 re f 26.625 728.623 0.750 13.030 re f 0.271 0.267 0.267 rg BT 31.500 731.754 Td /F4 9.8 Tf [(Question Information received)] TJ ET 0.965 0.965 0.965 rg 279.253 728.998 259.274 12.280 re f 0.267 0.267 0.267 rg 279.253 740.902 259.274 0.750 re f 0.271 0.267 0.267 rg BT 283.753 731.754 Td /F4 9.8 Tf [(Answer)] TJ ET 0.965 0.965 0.965 rg 538.527 728.998 41.973 12.280 re f 0.267 0.267 0.267 rg 538.527 740.902 42.348 0.750 re f 580.125 728.623 0.750 13.030 re f 0.271 0.267 0.267 rg BT 543.027 731.754 Td /F4 9.8 Tf [(%)] TJ ET 0.267 0.267 0.267 rg 26.625 728.623 253.003 0.750 re f 26.625 697.479 0.750 31.894 re f 0.271 0.267 0.267 rg BT 31.875 718.768 Td /F1 9.8 Tf [(Were you given any written information about )] TJ ET BT 31.875 711.136 Td /F1 9.8 Tf [(screening for DMD? \(n = 138\))] TJ ET 0.267 0.267 0.267 rg 278.878 728.623 260.024 0.750 re f 278.878 697.479 0.750 31.894 re f 0.271 0.267 0.267 rg BT 284.128 718.768 Td /F1 9.8 Tf [(Yes)] TJ ET BT 284.128 711.136 Td /F1 9.8 Tf [(No)] TJ ET BT 284.128 703.505 Td /F1 9.8 Tf [(Dont know/Dont remember)] TJ ET 0.267 0.267 0.267 rg 538.152 728.623 42.723 0.750 re f 538.152 697.479 0.750 31.894 re f 580.125 697.479 0.750 31.894 re f 0.271 0.267 0.267 rg BT 543.402 718.768 Td /F1 9.8 Tf [(94.9)] TJ ET BT 543.402 711.136 Td /F1 9.8 Tf [(0.7)] TJ ET BT 543.402 703.505 Td /F1 9.8 Tf [(4.3)] TJ ET 0.267 0.267 0.267 rg 26.625 697.479 253.003 0.750 re f 26.625 666.335 0.750 31.894 re f 0.271 0.267 0.267 rg BT 31.875 687.624 Td /F1 9.8 Tf [(Did you feel you had enough time to read the written )] TJ ET BT 31.875 679.993 Td /F1 9.8 Tf [(information? \(n = 130\))] TJ ET 0.267 0.267 0.267 rg 278.878 697.479 260.024 0.750 re f 278.878 666.335 0.750 31.894 re f 0.271 0.267 0.267 rg BT 284.128 687.624 Td /F1 9.8 Tf [(Yes)] TJ ET BT 284.128 679.993 Td /F1 9.8 Tf [(No)] TJ ET BT 284.128 672.361 Td /F1 9.8 Tf [(Dont Know/Dont remember)] TJ ET 0.267 0.267 0.267 rg 538.152 697.479 42.723 0.750 re f 538.152 666.335 0.750 31.894 re f 580.125 666.335 0.750 31.894 re f 0.271 0.267 0.267 rg BT 543.402 687.624 Td /F1 9.8 Tf [(78.5)] TJ ET BT 543.402 679.993 Td /F1 9.8 Tf [(17.7)] TJ ET BT 543.402 672.361 Td /F1 9.8 Tf [(3.8)] TJ ET 0.267 0.267 0.267 rg 26.625 666.335 253.003 0.750 re f 26.625 642.823 0.750 24.262 re f 0.271 0.267 0.267 rg BT 31.875 656.480 Td /F1 9.8 Tf [(How well did you understand the written information )] TJ ET BT 31.875 648.849 Td /F1 9.8 Tf [(about DMD screening? \(n = 125\))] TJ ET 0.267 0.267 0.267 rg 278.878 666.335 260.024 0.750 re f 278.878 642.823 0.750 24.262 re f 0.271 0.267 0.267 rg BT 284.128 656.480 Td /F1 9.8 Tf [(Very well/Well/Well enough)] TJ ET BT 284.128 648.849 Td /F1 9.8 Tf [(Not well/Not at all)] TJ ET 0.267 0.267 0.267 rg 538.152 666.335 42.723 0.750 re f 538.152 642.823 0.750 24.262 re f 580.125 642.823 0.750 24.262 re f 0.271 0.267 0.267 rg BT 543.402 656.480 Td /F1 9.8 Tf [(96.8)] TJ ET BT 543.402 648.849 Td /F1 9.8 Tf [(3.2)] TJ ET 0.267 0.267 0.267 rg 26.625 642.823 253.003 0.750 re f 26.625 611.679 0.750 31.894 re f 0.271 0.267 0.267 rg BT 31.875 632.968 Td /F1 9.8 Tf [(How helpful was the written information when deciding )] TJ ET BT 31.875 625.336 Td /F1 9.8 Tf [(to have your son screened? \(n = 128\))] TJ ET 0.267 0.267 0.267 rg 278.878 642.823 260.024 0.750 re f 278.878 611.679 0.750 31.894 re f 0.271 0.267 0.267 rg BT 284.128 632.968 Td /F1 9.8 Tf [(Very/Somewhat helpful)] TJ ET BT 284.128 625.336 Td /F1 9.8 Tf [(Neutral)] TJ ET BT 284.128 617.705 Td /F1 9.8 Tf [(Not very/Not helpful at all)] TJ ET 0.267 0.267 0.267 rg 538.152 642.823 42.723 0.750 re f 538.152 611.679 0.750 31.894 re f 580.125 611.679 0.750 31.894 re f 0.271 0.267 0.267 rg BT 543.402 632.968 Td /F1 9.8 Tf [(68.8)] TJ ET BT 543.402 625.336 Td /F1 9.8 Tf [(24.2)] TJ ET BT 543.402 617.705 Td /F1 9.8 Tf [(7.0)] TJ ET 0.267 0.267 0.267 rg 26.625 611.679 253.003 0.750 re f 26.625 407.845 0.750 204.584 re f 0.271 0.267 0.267 rg BT 31.875 601.824 Td /F1 9.8 Tf [(Did anyone talk to you about the written information for )] TJ ET BT 31.875 594.193 Td /F1 9.8 Tf [(screening? \(n = 138\))] TJ ET 0.267 0.267 0.267 rg 278.878 611.679 260.024 0.750 re f 278.878 407.845 0.750 204.584 re f 0.271 0.267 0.267 rg BT 284.128 601.824 Td /F1 9.8 Tf [(Yes)] TJ ET BT 284.128 594.193 Td /F1 9.8 Tf [(No)] TJ ET BT 284.128 586.561 Td /F1 9.8 Tf [(Dont Know/Dont remember)] TJ ET 0.267 0.267 0.267 rg 538.152 611.679 42.723 0.750 re f 538.152 407.845 0.750 204.584 re f 580.125 407.845 0.750 204.584 re f 0.271 0.267 0.267 rg BT 543.402 601.824 Td /F1 9.8 Tf [(90.6)] TJ ET BT 543.402 594.193 Td /F1 9.8 Tf [(4.3)] TJ ET BT 543.402 586.561 Td /F1 9.8 Tf [(5.1)] TJ ET 0.267 0.267 0.267 rg 26.625 407.845 253.003 0.750 re f 26.625 376.702 0.750 31.894 re f 0.271 0.267 0.267 rg BT 31.875 397.990 Td /F1 9.8 Tf [(How helpful was this person in explaining screening for )] TJ ET BT 31.875 390.359 Td /F1 9.8 Tf [(DMD? \(n = 123\))] TJ ET 0.267 0.267 0.267 rg 278.878 407.845 260.024 0.750 re f 278.878 376.702 0.750 31.894 re f 0.271 0.267 0.267 rg BT 284.128 397.990 Td /F1 9.8 Tf [(Very/Somewhat helpful)] TJ ET BT 284.128 390.359 Td /F1 9.8 Tf [(Neutral)] TJ ET BT 284.128 382.728 Td /F1 9.8 Tf [(Not very/Not helpful at all)] TJ ET 0.267 0.267 0.267 rg 538.152 407.845 42.723 0.750 re f 538.152 376.702 0.750 31.894 re f 580.125 376.702 0.750 31.894 re f 0.271 0.267 0.267 rg BT 543.402 397.990 Td /F1 9.8 Tf [(94.3)] TJ ET BT 543.402 390.359 Td /F1 9.8 Tf [(4.1)] TJ ET BT 543.402 382.728 Td /F1 9.8 Tf [(1.6)] TJ ET 0.267 0.267 0.267 rg 26.625 376.702 253.003 0.750 re f 26.625 345.558 0.750 31.894 re f 0.271 0.267 0.267 rg BT 31.875 366.847 Td /F1 9.8 Tf [(Did this person give you enough time to ask questions )] TJ ET BT 31.875 359.215 Td /F1 9.8 Tf [(about DMD screening? \(n = 124\))] TJ ET 0.267 0.267 0.267 rg 278.878 376.702 260.024 0.750 re f 278.878 345.558 0.750 31.894 re f 0.271 0.267 0.267 rg BT 284.128 366.847 Td /F1 9.8 Tf [(Yes)] TJ ET BT 284.128 359.215 Td /F1 9.8 Tf [(No)] TJ ET BT 284.128 351.584 Td /F1 9.8 Tf [(Dont know/Dont remember)] TJ ET 0.267 0.267 0.267 rg 538.152 376.702 42.723 0.750 re f 538.152 345.558 0.750 31.894 re f 580.125 345.558 0.750 31.894 re f 0.271 0.267 0.267 rg BT 543.402 366.847 Td /F1 9.8 Tf [(92.7)] TJ ET BT 543.402 359.215 Td /F1 9.8 Tf [(1.6)] TJ ET BT 543.402 351.584 Td /F1 9.8 Tf [(5.6)] TJ ET 0.267 0.267 0.267 rg 26.625 345.558 253.003 0.750 re f 26.625 329.677 0.750 16.631 re f 0.271 0.267 0.267 rg BT 31.875 335.703 Td /F4 9.8 Tf [(Question Knowledge \(n = 135\))] TJ ET 0.267 0.267 0.267 rg 278.878 345.558 260.024 0.750 re f 278.878 329.677 0.750 16.631 re f 0.271 0.267 0.267 rg BT 284.128 335.703 Td /F4 9.8 Tf [(Correct Answer)] TJ ET 0.267 0.267 0.267 rg 538.152 345.558 42.723 0.750 re f 538.152 329.677 0.750 16.631 re f 580.125 329.677 0.750 16.631 re f 0.271 0.267 0.267 rg BT 543.402 335.703 Td /F4 9.8 Tf [(%)] TJ ET 0.267 0.267 0.267 rg 26.625 329.677 253.003 0.750 re f 26.625 313.795 0.750 16.631 re f 0.271 0.267 0.267 rg BT 31.875 319.822 Td /F1 9.8 Tf [(DMD is:)] TJ ET 0.267 0.267 0.267 rg 278.878 329.677 260.024 0.750 re f 278.878 313.795 0.750 16.631 re f 0.271 0.267 0.267 rg BT 284.128 319.822 Td /F1 9.8 Tf [(The most common form of muscular dystrophy)] TJ ET 0.267 0.267 0.267 rg 538.152 329.677 42.723 0.750 re f 538.152 313.795 0.750 16.631 re f 580.125 313.795 0.750 16.631 re f 0.271 0.267 0.267 rg BT 543.402 319.822 Td /F1 9.8 Tf [(63.0)] TJ ET 0.267 0.267 0.267 rg 26.625 313.795 253.003 0.750 re f 26.625 290.283 0.750 24.262 re f 0.271 0.267 0.267 rg BT 31.875 303.940 Td /F1 9.8 Tf [(DMD is a genetic condition that weakens the:)] TJ ET 0.267 0.267 0.267 rg 278.878 313.795 260.024 0.750 re f 278.878 290.283 0.750 24.262 re f 0.271 0.267 0.267 rg BT 284.128 303.940 Td /F1 9.8 Tf [(All of the above \(arm and leg, heart, and breathing )] TJ ET BT 284.128 296.309 Td /F1 9.8 Tf [(muscles\))] TJ ET 0.267 0.267 0.267 rg 538.152 313.795 42.723 0.750 re f 538.152 290.283 0.750 24.262 re f 580.125 290.283 0.750 24.262 re f 0.271 0.267 0.267 rg BT 543.402 303.940 Td /F1 9.8 Tf [(40.7)] TJ ET 0.267 0.267 0.267 rg 26.625 290.283 253.003 0.750 re f 26.625 266.770 0.750 24.262 re f 0.271 0.267 0.267 rg BT 31.875 280.428 Td /F1 9.8 Tf [(DMD can happen:)] TJ ET 0.267 0.267 0.267 rg 278.878 290.283 260.024 0.750 re f 278.878 266.770 0.750 24.262 re f 0.271 0.267 0.267 rg BT 284.128 280.428 Td /F1 9.8 Tf [(All of the above \(in families with or without a relative with )] TJ ET BT 284.128 272.797 Td /F1 9.8 Tf [(DMD, in all racial backgrounds\))] TJ ET 0.267 0.267 0.267 rg 538.152 290.283 42.723 0.750 re f 538.152 266.770 0.750 24.262 re f 580.125 266.770 0.750 24.262 re f 0.271 0.267 0.267 rg BT 543.402 280.428 Td /F1 9.8 Tf [(60.7)] TJ ET 0.267 0.267 0.267 rg 26.625 266.770 253.003 0.750 re f 26.625 250.889 0.750 16.631 re f 0.271 0.267 0.267 rg BT 31.875 256.915 Td /F1 9.8 Tf [(Screening finds affected infants before symptoms start:)] TJ ET 0.267 0.267 0.267 rg 278.878 266.770 260.024 0.750 re f 278.878 250.889 0.750 16.631 re f 0.271 0.267 0.267 rg BT 284.128 256.915 Td /F1 9.8 Tf [(True)] TJ ET 0.267 0.267 0.267 rg 538.152 266.770 42.723 0.750 re f 538.152 250.889 0.750 16.631 re f 580.125 250.889 0.750 16.631 re f 0.271 0.267 0.267 rg BT 543.402 256.915 Td /F1 9.8 Tf [(92.8)] TJ ET 0.267 0.267 0.267 rg 26.625 250.889 253.003 0.750 re f 26.625 235.008 253.003 0.750 re f 26.625 235.008 0.750 16.631 re f 0.271 0.267 0.267 rg BT 31.875 241.034 Td /F1 9.8 Tf [(Once a child is found to have DMD:)] TJ ET 0.267 0.267 0.267 rg 278.878 250.889 260.024 0.750 re f 278.878 235.008 260.024 0.750 re f 278.878 235.008 0.750 16.631 re f 0.271 0.267 0.267 rg BT 284.128 241.034 Td /F1 9.8 Tf [(Treatment may slow down the progress of the disorder)] TJ ET 0.267 0.267 0.267 rg 538.152 250.889 42.723 0.750 re f 538.152 235.008 42.723 0.750 re f 538.152 235.008 0.750 16.631 re f 580.125 235.008 0.750 16.631 re f 0.271 0.267 0.267 rg BT 543.402 241.034 Td /F1 9.8 Tf [(69.9)] TJ ET BT 26.250 180.109 Td /F1 9.8 Tf [(Over 95% of parents felt they understood the study information well and their answers to the knowledge questions generally )] TJ ET BT 26.250 168.204 Td /F1 9.8 Tf [(reflected this \()] TJ ET BT 87.480 168.204 Td /F4 9.8 Tf [(Table 3)] TJ ET BT 121.078 168.204 Td /F1 9.8 Tf [(\). The range of correct responses from a participant was 0 to 5, with a mean of 3.27 \(SD. = 1.4\). About )] TJ ET BT 26.250 156.300 Td /F1 9.8 Tf [(three-quarters \(74.6%\) of respondents answered at least three of the five questions correctly. To determine whether the amount )] TJ ET BT 26.250 144.395 Td /F1 9.8 Tf [(of time between screening and completion of the survey influenced the number of questions answered correctly, knowledge )] TJ ET BT 26.250 132.490 Td /F1 9.8 Tf [(question results were compared between parents who answered the questionnaire from the first mailing and those who )] TJ ET BT 26.250 120.585 Td /F1 9.8 Tf [(answered from the second mailing. The mean number of questions answered correctly between these two groups differed )] TJ ET BT 26.250 108.681 Td /F1 9.8 Tf [(statistically \()] TJ ET BT 79.339 108.681 Td /F5 9.8 Tf [(P)] TJ ET BT 85.842 108.681 Td /F1 9.8 Tf [( < 0.01\), with those answering the questionnaire from the first mailing \(n = 60; mean= 3.57; SD = 1.2\) answering )] TJ ET BT 26.250 96.776 Td /F1 9.8 Tf [(more questions correctly than those who answered them at a later date \(n = 61; mean = 2.90; SD = 1.4\). Overall, these data )] TJ ET BT 26.250 84.871 Td /F1 9.8 Tf [(showed that most parents had a good understanding of the information and also suggested that parents likely had an even )] TJ ET BT 26.250 72.966 Td /F1 9.8 Tf [(better understanding of the risks and benefits of DMD screening at the time they made the decision to screen.)] TJ ET BT 26.250 53.562 Td /F5 9.8 Tf [(Parental Experience and Opinions)] TJ ET Q q 15.000 43.681 577.500 733.319 re W n q 26.250 749.527 555.000 27.473 re W n 0.271 0.267 0.267 rg BT 26.250 766.011 Td /F1 9.8 Tf [(Table 3. Questions and respondent answers used to evaluate parents perceived usefulness of the information they received )] TJ ET BT 26.250 752.275 Td /F1 9.8 Tf [(and their knowledge of Duchenne muscular dystrophy screening)] TJ ET Q 1.000 1.000 1.000 rg 26.250 234.633 555.000 507.395 re f 0.965 0.965 0.965 rg 27.000 728.998 252.253 12.280 re f 0.267 0.267 0.267 rg 26.625 740.902 252.628 0.750 re f 26.625 728.623 0.750 13.030 re f 0.271 0.267 0.267 rg BT 31.500 731.754 Td /F4 9.8 Tf [(Question Information received)] TJ ET 0.965 0.965 0.965 rg 279.253 728.998 259.274 12.280 re f 0.267 0.267 0.267 rg 279.253 740.902 259.274 0.750 re f 0.271 0.267 0.267 rg BT 283.753 731.754 Td /F4 9.8 Tf [(Answer)] TJ ET 0.965 0.965 0.965 rg 538.527 728.998 41.973 12.280 re f 0.267 0.267 0.267 rg 538.527 740.902 42.348 0.750 re f 580.125 728.623 0.750 13.030 re f 0.271 0.267 0.267 rg BT 543.027 731.754 Td /F4 9.8 Tf [(%)] TJ ET 0.267 0.267 0.267 rg 26.625 728.623 253.003 0.750 re f 26.625 697.479 0.750 31.894 re f 0.271 0.267 0.267 rg BT 31.875 718.768 Td /F1 9.8 Tf [(Were you given any written information about )] TJ ET BT 31.875 711.136 Td /F1 9.8 Tf [(screening for DMD? \(n = 138\))] TJ ET 0.267 0.267 0.267 rg 278.878 728.623 260.024 0.750 re f 278.878 697.479 0.750 31.894 re f 0.271 0.267 0.267 rg BT 284.128 718.768 Td /F1 9.8 Tf [(Yes)] TJ ET BT 284.128 711.136 Td /F1 9.8 Tf [(No)] TJ ET BT 284.128 703.505 Td /F1 9.8 Tf [(Dont know/Dont remember)] TJ ET 0.267 0.267 0.267 rg 538.152 728.623 42.723 0.750 re f 538.152 697.479 0.750 31.894 re f 580.125 697.479 0.750 31.894 re f 0.271 0.267 0.267 rg BT 543.402 718.768 Td /F1 9.8 Tf [(94.9)] TJ ET BT 543.402 711.136 Td /F1 9.8 Tf [(0.7)] TJ ET BT 543.402 703.505 Td /F1 9.8 Tf [(4.3)] TJ ET 0.267 0.267 0.267 rg 26.625 697.479 253.003 0.750 re f 26.625 666.335 0.750 31.894 re f 0.271 0.267 0.267 rg BT 31.875 687.624 Td /F1 9.8 Tf [(Did you feel you had enough time to read the written )] TJ ET BT 31.875 679.993 Td /F1 9.8 Tf [(information? \(n = 130\))] TJ ET 0.267 0.267 0.267 rg 278.878 697.479 260.024 0.750 re f 278.878 666.335 0.750 31.894 re f 0.271 0.267 0.267 rg BT 284.128 687.624 Td /F1 9.8 Tf [(Yes)] TJ ET BT 284.128 679.993 Td /F1 9.8 Tf [(No)] TJ ET BT 284.128 672.361 Td /F1 9.8 Tf [(Dont Know/Dont remember)] TJ ET 0.267 0.267 0.267 rg 538.152 697.479 42.723 0.750 re f 538.152 666.335 0.750 31.894 re f 580.125 666.335 0.750 31.894 re f 0.271 0.267 0.267 rg BT 543.402 687.624 Td /F1 9.8 Tf [(78.5)] TJ ET BT 543.402 679.993 Td /F1 9.8 Tf [(17.7)] TJ ET BT 543.402 672.361 Td /F1 9.8 Tf [(3.8)] TJ ET 0.267 0.267 0.267 rg 26.625 666.335 253.003 0.750 re f 26.625 642.823 0.750 24.262 re f 0.271 0.267 0.267 rg BT 31.875 656.480 Td /F1 9.8 Tf [(How well did you understand the written information )] TJ ET BT 31.875 648.849 Td /F1 9.8 Tf [(about DMD screening? \(n = 125\))] TJ ET 0.267 0.267 0.267 rg 278.878 666.335 260.024 0.750 re f 278.878 642.823 0.750 24.262 re f 0.271 0.267 0.267 rg BT 284.128 656.480 Td /F1 9.8 Tf [(Very well/Well/Well enough)] TJ ET BT 284.128 648.849 Td /F1 9.8 Tf [(Not well/Not at all)] TJ ET 0.267 0.267 0.267 rg 538.152 666.335 42.723 0.750 re f 538.152 642.823 0.750 24.262 re f 580.125 642.823 0.750 24.262 re f 0.271 0.267 0.267 rg BT 543.402 656.480 Td /F1 9.8 Tf [(96.8)] TJ ET BT 543.402 648.849 Td /F1 9.8 Tf [(3.2)] TJ ET 0.267 0.267 0.267 rg 26.625 642.823 253.003 0.750 re f 26.625 611.679 0.750 31.894 re f 0.271 0.267 0.267 rg BT 31.875 632.968 Td /F1 9.8 Tf [(How helpful was the written information when deciding )] TJ ET BT 31.875 625.336 Td /F1 9.8 Tf [(to have your son screened? \(n = 128\))] TJ ET 0.267 0.267 0.267 rg 278.878 642.823 260.024 0.750 re f 278.878 611.679 0.750 31.894 re f 0.271 0.267 0.267 rg BT 284.128 632.968 Td /F1 9.8 Tf [(Very/Somewhat helpful)] TJ ET BT 284.128 625.336 Td /F1 9.8 Tf [(Neutral)] TJ ET BT 284.128 617.705 Td /F1 9.8 Tf [(Not very/Not helpful at all)] TJ ET 0.267 0.267 0.267 rg 538.152 642.823 42.723 0.750 re f 538.152 611.679 0.750 31.894 re f 580.125 611.679 0.750 31.894 re f 0.271 0.267 0.267 rg BT 543.402 632.968 Td /F1 9.8 Tf [(68.8)] TJ ET BT 543.402 625.336 Td /F1 9.8 Tf [(24.2)] TJ ET BT 543.402 617.705 Td /F1 9.8 Tf [(7.0)] TJ ET 0.267 0.267 0.267 rg 26.625 611.679 253.003 0.750 re f 26.625 407.845 0.750 204.584 re f 0.271 0.267 0.267 rg BT 31.875 601.824 Td /F1 9.8 Tf [(Did anyone talk to you about the written information for )] TJ ET BT 31.875 594.193 Td /F1 9.8 Tf [(screening? \(n = 138\))] TJ ET 0.267 0.267 0.267 rg 278.878 611.679 260.024 0.750 re f 278.878 407.845 0.750 204.584 re f 0.271 0.267 0.267 rg BT 284.128 601.824 Td /F1 9.8 Tf [(Yes)] TJ ET BT 284.128 594.193 Td /F1 9.8 Tf [(No)] TJ ET BT 284.128 586.561 Td /F1 9.8 Tf [(Dont Know/Dont remember)] TJ ET 0.267 0.267 0.267 rg 538.152 611.679 42.723 0.750 re f 538.152 407.845 0.750 204.584 re f 580.125 407.845 0.750 204.584 re f 0.271 0.267 0.267 rg BT 543.402 601.824 Td /F1 9.8 Tf [(90.6)] TJ ET BT 543.402 594.193 Td /F1 9.8 Tf [(4.3)] TJ ET BT 543.402 586.561 Td /F1 9.8 Tf [(5.1)] TJ ET 0.267 0.267 0.267 rg 26.625 407.845 253.003 0.750 re f 26.625 376.702 0.750 31.894 re f 0.271 0.267 0.267 rg BT 31.875 397.990 Td /F1 9.8 Tf [(How helpful was this person in explaining screening for )] TJ ET BT 31.875 390.359 Td /F1 9.8 Tf [(DMD? \(n = 123\))] TJ ET 0.267 0.267 0.267 rg 278.878 407.845 260.024 0.750 re f 278.878 376.702 0.750 31.894 re f 0.271 0.267 0.267 rg BT 284.128 397.990 Td /F1 9.8 Tf [(Very/Somewhat helpful)] TJ ET BT 284.128 390.359 Td /F1 9.8 Tf [(Neutral)] TJ ET BT 284.128 382.728 Td /F1 9.8 Tf [(Not very/Not helpful at all)] TJ ET 0.267 0.267 0.267 rg 538.152 407.845 42.723 0.750 re f 538.152 376.702 0.750 31.894 re f 580.125 376.702 0.750 31.894 re f 0.271 0.267 0.267 rg BT 543.402 397.990 Td /F1 9.8 Tf [(94.3)] TJ ET BT 543.402 390.359 Td /F1 9.8 Tf [(4.1)] TJ ET BT 543.402 382.728 Td /F1 9.8 Tf [(1.6)] TJ ET 0.267 0.267 0.267 rg 26.625 376.702 253.003 0.750 re f 26.625 345.558 0.750 31.894 re f 0.271 0.267 0.267 rg BT 31.875 366.847 Td /F1 9.8 Tf [(Did this person give you enough time to ask questions )] TJ ET BT 31.875 359.215 Td /F1 9.8 Tf [(about DMD screening? \(n = 124\))] TJ ET 0.267 0.267 0.267 rg 278.878 376.702 260.024 0.750 re f 278.878 345.558 0.750 31.894 re f 0.271 0.267 0.267 rg BT 284.128 366.847 Td /F1 9.8 Tf [(Yes)] TJ ET BT 284.128 359.215 Td /F1 9.8 Tf [(No)] TJ ET BT 284.128 351.584 Td /F1 9.8 Tf [(Dont know/Dont remember)] TJ ET 0.267 0.267 0.267 rg 538.152 376.702 42.723 0.750 re f 538.152 345.558 0.750 31.894 re f 580.125 345.558 0.750 31.894 re f 0.271 0.267 0.267 rg BT 543.402 366.847 Td /F1 9.8 Tf [(92.7)] TJ ET BT 543.402 359.215 Td /F1 9.8 Tf [(1.6)] TJ ET BT 543.402 351.584 Td /F1 9.8 Tf [(5.6)] TJ ET 0.267 0.267 0.267 rg 26.625 345.558 253.003 0.750 re f 26.625 329.677 0.750 16.631 re f 0.271 0.267 0.267 rg BT 31.875 335.703 Td /F4 9.8 Tf [(Question Knowledge \(n = 135\))] TJ ET 0.267 0.267 0.267 rg 278.878 345.558 260.024 0.750 re f 278.878 329.677 0.750 16.631 re f 0.271 0.267 0.267 rg BT 284.128 335.703 Td /F4 9.8 Tf [(Correct Answer)] TJ ET 0.267 0.267 0.267 rg 538.152 345.558 42.723 0.750 re f 538.152 329.677 0.750 16.631 re f 580.125 329.677 0.750 16.631 re f 0.271 0.267 0.267 rg BT 543.402 335.703 Td /F4 9.8 Tf [(%)] TJ ET 0.267 0.267 0.267 rg 26.625 329.677 253.003 0.750 re f 26.625 313.795 0.750 16.631 re f 0.271 0.267 0.267 rg BT 31.875 319.822 Td /F1 9.8 Tf [(DMD is:)] TJ ET 0.267 0.267 0.267 rg 278.878 329.677 260.024 0.750 re f 278.878 313.795 0.750 16.631 re f 0.271 0.267 0.267 rg BT 284.128 319.822 Td /F1 9.8 Tf [(The most common form of muscular dystrophy)] TJ ET 0.267 0.267 0.267 rg 538.152 329.677 42.723 0.750 re f 538.152 313.795 0.750 16.631 re f 580.125 313.795 0.750 16.631 re f 0.271 0.267 0.267 rg BT 543.402 319.822 Td /F1 9.8 Tf [(63.0)] TJ ET 0.267 0.267 0.267 rg 26.625 313.795 253.003 0.750 re f 26.625 290.283 0.750 24.262 re f 0.271 0.267 0.267 rg BT 31.875 303.940 Td /F1 9.8 Tf [(DMD is a genetic condition that weakens the:)] TJ ET 0.267 0.267 0.267 rg 278.878 313.795 260.024 0.750 re f 278.878 290.283 0.750 24.262 re f 0.271 0.267 0.267 rg BT 284.128 303.940 Td /F1 9.8 Tf [(All of the above \(arm and leg, heart, and breathing )] TJ ET BT 284.128 296.309 Td /F1 9.8 Tf [(muscles\))] TJ ET 0.267 0.267 0.267 rg 538.152 313.795 42.723 0.750 re f 538.152 290.283 0.750 24.262 re f 580.125 290.283 0.750 24.262 re f 0.271 0.267 0.267 rg BT 543.402 303.940 Td /F1 9.8 Tf [(40.7)] TJ ET 0.267 0.267 0.267 rg 26.625 290.283 253.003 0.750 re f 26.625 266.770 0.750 24.262 re f 0.271 0.267 0.267 rg BT 31.875 280.428 Td /F1 9.8 Tf [(DMD can happen:)] TJ ET 0.267 0.267 0.267 rg 278.878 290.283 260.024 0.750 re f 278.878 266.770 0.750 24.262 re f 0.271 0.267 0.267 rg BT 284.128 280.428 Td /F1 9.8 Tf [(All of the above \(in families with or without a relative with )] TJ ET BT 284.128 272.797 Td /F1 9.8 Tf [(DMD, in all racial backgrounds\))] TJ ET 0.267 0.267 0.267 rg 538.152 290.283 42.723 0.750 re f 538.152 266.770 0.750 24.262 re f 580.125 266.770 0.750 24.262 re f 0.271 0.267 0.267 rg BT 543.402 280.428 Td /F1 9.8 Tf [(60.7)] TJ ET 0.267 0.267 0.267 rg 26.625 266.770 253.003 0.750 re f 26.625 250.889 0.750 16.631 re f 0.271 0.267 0.267 rg BT 31.875 256.915 Td /F1 9.8 Tf [(Screening finds affected infants before symptoms start:)] TJ ET 0.267 0.267 0.267 rg 278.878 266.770 260.024 0.750 re f 278.878 250.889 0.750 16.631 re f 0.271 0.267 0.267 rg BT 284.128 256.915 Td /F1 9.8 Tf [(True)] TJ ET 0.267 0.267 0.267 rg 538.152 266.770 42.723 0.750 re f 538.152 250.889 0.750 16.631 re f 580.125 250.889 0.750 16.631 re f 0.271 0.267 0.267 rg BT 543.402 256.915 Td /F1 9.8 Tf [(92.8)] TJ ET 0.267 0.267 0.267 rg 26.625 250.889 253.003 0.750 re f 26.625 235.008 253.003 0.750 re f 26.625 235.008 0.750 16.631 re f 0.271 0.267 0.267 rg BT 31.875 241.034 Td /F1 9.8 Tf [(Once a child is found to have DMD:)] TJ ET 0.267 0.267 0.267 rg 278.878 250.889 260.024 0.750 re f 278.878 235.008 260.024 0.750 re f 278.878 235.008 0.750 16.631 re f 0.271 0.267 0.267 rg BT 284.128 241.034 Td /F1 9.8 Tf [(Treatment may slow down the progress of the disorder)] TJ ET 0.267 0.267 0.267 rg 538.152 250.889 42.723 0.750 re f 538.152 235.008 42.723 0.750 re f 538.152 235.008 0.750 16.631 re f 580.125 235.008 0.750 16.631 re f 0.271 0.267 0.267 rg BT 543.402 241.034 Td /F1 9.8 Tf [(69.9)] TJ ET BT 26.250 180.109 Td /F1 9.8 Tf [(Over 95% of parents felt they understood the study information well and their answers to the knowledge questions generally )] TJ ET BT 26.250 168.204 Td /F1 9.8 Tf [(reflected this \()] TJ ET BT 87.480 168.204 Td /F4 9.8 Tf [(Table 3)] TJ ET BT 121.078 168.204 Td /F1 9.8 Tf [(\). The range of correct responses from a participant was 0 to 5, with a mean of 3.27 \(SD. = 1.4\). About )] TJ ET BT 26.250 156.300 Td /F1 9.8 Tf [(three-quarters \(74.6%\) of respondents answered at least three of the five questions correctly. To determine whether the amount )] TJ ET BT 26.250 144.395 Td /F1 9.8 Tf [(of time between screening and completion of the survey influenced the number of questions answered correctly, knowledge )] TJ ET BT 26.250 132.490 Td /F1 9.8 Tf [(question results were compared between parents who answered the questionnaire from the first mailing and those who )] TJ ET BT 26.250 120.585 Td /F1 9.8 Tf [(answered from the second mailing. The mean number of questions answered correctly between these two groups differed )] TJ ET BT 26.250 108.681 Td /F1 9.8 Tf [(statistically \()] TJ ET BT 79.339 108.681 Td /F5 9.8 Tf [(P)] TJ ET BT 85.842 108.681 Td /F1 9.8 Tf [( < 0.01\), with those answering the questionnaire from the first mailing \(n = 60; mean= 3.57; SD = 1.2\) answering )] TJ ET BT 26.250 96.776 Td /F1 9.8 Tf [(more questions correctly than those who answered them at a later date \(n = 61; mean = 2.90; SD = 1.4\). Overall, these data )] TJ ET BT 26.250 84.871 Td /F1 9.8 Tf [(showed that most parents had a good understanding of the information and also suggested that parents likely had an even )] TJ ET BT 26.250 72.966 Td /F1 9.8 Tf [(better understanding of the risks and benefits of DMD screening at the time they made the decision to screen.)] TJ ET BT 26.250 53.562 Td /F5 9.8 Tf [(Parental Experience and Opinions)] TJ ET Q q 15.000 43.681 577.500 733.319 re W n q 26.250 749.527 555.000 27.473 re W n 0.271 0.267 0.267 rg BT 26.250 766.011 Td /F1 9.8 Tf [(Table 3. Questions and respondent answers used to evaluate parents perceived usefulness of the information they received )] TJ ET BT 26.250 752.275 Td /F1 9.8 Tf [(and their knowledge of Duchenne muscular dystrophy screening)] TJ ET Q 1.000 1.000 1.000 rg 26.250 234.633 555.000 507.395 re f 0.965 0.965 0.965 rg 27.000 728.998 252.253 12.280 re f 0.267 0.267 0.267 rg 26.625 740.902 252.628 0.750 re f 26.625 728.623 0.750 13.030 re f 0.271 0.267 0.267 rg BT 31.500 731.754 Td /F4 9.8 Tf [(Question Information received)] TJ ET 0.965 0.965 0.965 rg 279.253 728.998 259.274 12.280 re f 0.267 0.267 0.267 rg 279.253 740.902 259.274 0.750 re f 0.271 0.267 0.267 rg BT 283.753 731.754 Td /F4 9.8 Tf [(Answer)] TJ ET 0.965 0.965 0.965 rg 538.527 728.998 41.973 12.280 re f 0.267 0.267 0.267 rg 538.527 740.902 42.348 0.750 re f 580.125 728.623 0.750 13.030 re f 0.271 0.267 0.267 rg BT 543.027 731.754 Td /F4 9.8 Tf [(%)] TJ ET 0.267 0.267 0.267 rg 26.625 728.623 253.003 0.750 re f 26.625 697.479 0.750 31.894 re f 0.271 0.267 0.267 rg BT 31.875 718.768 Td /F1 9.8 Tf [(Were you given any written information about )] TJ ET BT 31.875 711.136 Td /F1 9.8 Tf [(screening for DMD? \(n = 138\))] TJ ET 0.267 0.267 0.267 rg 278.878 728.623 260.024 0.750 re f 278.878 697.479 0.750 31.894 re f 0.271 0.267 0.267 rg BT 284.128 718.768 Td /F1 9.8 Tf [(Yes)] TJ ET BT 284.128 711.136 Td /F1 9.8 Tf [(No)] TJ ET BT 284.128 703.505 Td /F1 9.8 Tf [(Dont know/Dont remember)] TJ ET 0.267 0.267 0.267 rg 538.152 728.623 42.723 0.750 re f 538.152 697.479 0.750 31.894 re f 580.125 697.479 0.750 31.894 re f 0.271 0.267 0.267 rg BT 543.402 718.768 Td /F1 9.8 Tf [(94.9)] TJ ET BT 543.402 711.136 Td /F1 9.8 Tf [(0.7)] TJ ET BT 543.402 703.505 Td /F1 9.8 Tf [(4.3)] TJ ET 0.267 0.267 0.267 rg 26.625 697.479 253.003 0.750 re f 26.625 666.335 0.750 31.894 re f 0.271 0.267 0.267 rg BT 31.875 687.624 Td /F1 9.8 Tf [(Did you feel you had enough time to read the written )] TJ ET BT 31.875 679.993 Td /F1 9.8 Tf [(information? \(n = 130\))] TJ ET 0.267 0.267 0.267 rg 278.878 697.479 260.024 0.750 re f 278.878 666.335 0.750 31.894 re f 0.271 0.267 0.267 rg BT 284.128 687.624 Td /F1 9.8 Tf [(Yes)] TJ ET BT 284.128 679.993 Td /F1 9.8 Tf [(No)] TJ ET BT 284.128 672.361 Td /F1 9.8 Tf [(Dont Know/Dont remember)] TJ ET 0.267 0.267 0.267 rg 538.152 697.479 42.723 0.750 re f 538.152 666.335 0.750 31.894 re f 580.125 666.335 0.750 31.894 re f 0.271 0.267 0.267 rg BT 543.402 687.624 Td /F1 9.8 Tf [(78.5)] TJ ET BT 543.402 679.993 Td /F1 9.8 Tf [(17.7)] TJ ET BT 543.402 672.361 Td /F1 9.8 Tf [(3.8)] TJ ET 0.267 0.267 0.267 rg 26.625 666.335 253.003 0.750 re f 26.625 642.823 0.750 24.262 re f 0.271 0.267 0.267 rg BT 31.875 656.480 Td /F1 9.8 Tf [(How well did you understand the written information )] TJ ET BT 31.875 648.849 Td /F1 9.8 Tf [(about DMD screening? \(n = 125\))] TJ ET 0.267 0.267 0.267 rg 278.878 666.335 260.024 0.750 re f 278.878 642.823 0.750 24.262 re f 0.271 0.267 0.267 rg BT 284.128 656.480 Td /F1 9.8 Tf [(Very well/Well/Well enough)] TJ ET BT 284.128 648.849 Td /F1 9.8 Tf [(Not well/Not at all)] TJ ET 0.267 0.267 0.267 rg 538.152 666.335 42.723 0.750 re f 538.152 642.823 0.750 24.262 re f 580.125 642.823 0.750 24.262 re f 0.271 0.267 0.267 rg BT 543.402 656.480 Td /F1 9.8 Tf [(96.8)] TJ ET BT 543.402 648.849 Td /F1 9.8 Tf [(3.2)] TJ ET 0.267 0.267 0.267 rg 26.625 642.823 253.003 0.750 re f 26.625 611.679 0.750 31.894 re f 0.271 0.267 0.267 rg BT 31.875 632.968 Td /F1 9.8 Tf [(How helpful was the written information when deciding )] TJ ET BT 31.875 625.336 Td /F1 9.8 Tf [(to have your son screened? \(n = 128\))] TJ ET 0.267 0.267 0.267 rg 278.878 642.823 260.024 0.750 re f 278.878 611.679 0.750 31.894 re f 0.271 0.267 0.267 rg BT 284.128 632.968 Td /F1 9.8 Tf [(Very/Somewhat helpful)] TJ ET BT 284.128 625.336 Td /F1 9.8 Tf [(Neutral)] TJ ET BT 284.128 617.705 Td /F1 9.8 Tf [(Not very/Not helpful at all)] TJ ET 0.267 0.267 0.267 rg 538.152 642.823 42.723 0.750 re f 538.152 611.679 0.750 31.894 re f 580.125 611.679 0.750 31.894 re f 0.271 0.267 0.267 rg BT 543.402 632.968 Td /F1 9.8 Tf [(68.8)] TJ ET BT 543.402 625.336 Td /F1 9.8 Tf [(24.2)] TJ ET BT 543.402 617.705 Td /F1 9.8 Tf [(7.0)] TJ ET 0.267 0.267 0.267 rg 26.625 611.679 253.003 0.750 re f 26.625 407.845 0.750 204.584 re f 0.271 0.267 0.267 rg BT 31.875 601.824 Td /F1 9.8 Tf [(Did anyone talk to you about the written information for )] TJ ET BT 31.875 594.193 Td /F1 9.8 Tf [(screening? \(n = 138\))] TJ ET 0.267 0.267 0.267 rg 278.878 611.679 260.024 0.750 re f 278.878 407.845 0.750 204.584 re f 0.271 0.267 0.267 rg BT 284.128 601.824 Td /F1 9.8 Tf [(Yes)] TJ ET BT 284.128 594.193 Td /F1 9.8 Tf [(No)] TJ ET BT 284.128 586.561 Td /F1 9.8 Tf [(Dont Know/Dont remember)] TJ ET 0.267 0.267 0.267 rg 538.152 611.679 42.723 0.750 re f 538.152 407.845 0.750 204.584 re f 580.125 407.845 0.750 204.584 re f 0.271 0.267 0.267 rg BT 543.402 601.824 Td /F1 9.8 Tf [(90.6)] TJ ET BT 543.402 594.193 Td /F1 9.8 Tf [(4.3)] TJ ET BT 543.402 586.561 Td /F1 9.8 Tf [(5.1)] TJ ET 0.267 0.267 0.267 rg 26.625 407.845 253.003 0.750 re f 26.625 376.702 0.750 31.894 re f 0.271 0.267 0.267 rg BT 31.875 397.990 Td /F1 9.8 Tf [(How helpful was this person in explaining screening for )] TJ ET BT 31.875 390.359 Td /F1 9.8 Tf [(DMD? \(n = 123\))] TJ ET 0.267 0.267 0.267 rg 278.878 407.845 260.024 0.750 re f 278.878 376.702 0.750 31.894 re f 0.271 0.267 0.267 rg BT 284.128 397.990 Td /F1 9.8 Tf [(Very/Somewhat helpful)] TJ ET BT 284.128 390.359 Td /F1 9.8 Tf [(Neutral)] TJ ET BT 284.128 382.728 Td /F1 9.8 Tf [(Not very/Not helpful at all)] TJ ET 0.267 0.267 0.267 rg 538.152 407.845 42.723 0.750 re f 538.152 376.702 0.750 31.894 re f 580.125 376.702 0.750 31.894 re f 0.271 0.267 0.267 rg BT 543.402 397.990 Td /F1 9.8 Tf [(94.3)] TJ ET BT 543.402 390.359 Td /F1 9.8 Tf [(4.1)] TJ ET BT 543.402 382.728 Td /F1 9.8 Tf [(1.6)] TJ ET 0.267 0.267 0.267 rg 26.625 376.702 253.003 0.750 re f 26.625 345.558 0.750 31.894 re f 0.271 0.267 0.267 rg BT 31.875 366.847 Td /F1 9.8 Tf [(Did this person give you enough time to ask questions )] TJ ET BT 31.875 359.215 Td /F1 9.8 Tf [(about DMD screening? \(n = 124\))] TJ ET 0.267 0.267 0.267 rg 278.878 376.702 260.024 0.750 re f 278.878 345.558 0.750 31.894 re f 0.271 0.267 0.267 rg BT 284.128 366.847 Td /F1 9.8 Tf [(Yes)] TJ ET BT 284.128 359.215 Td /F1 9.8 Tf [(No)] TJ ET BT 284.128 351.584 Td /F1 9.8 Tf [(Dont know/Dont remember)] TJ ET 0.267 0.267 0.267 rg 538.152 376.702 42.723 0.750 re f 538.152 345.558 0.750 31.894 re f 580.125 345.558 0.750 31.894 re f 0.271 0.267 0.267 rg BT 543.402 366.847 Td /F1 9.8 Tf [(92.7)] TJ ET BT 543.402 359.215 Td /F1 9.8 Tf [(1.6)] TJ ET BT 543.402 351.584 Td /F1 9.8 Tf [(5.6)] TJ ET 0.267 0.267 0.267 rg 26.625 345.558 253.003 0.750 re f 26.625 329.677 0.750 16.631 re f 0.271 0.267 0.267 rg BT 31.875 335.703 Td /F4 9.8 Tf [(Question Knowledge \(n = 135\))] TJ ET 0.267 0.267 0.267 rg 278.878 345.558 260.024 0.750 re f 278.878 329.677 0.750 16.631 re f 0.271 0.267 0.267 rg BT 284.128 335.703 Td /F4 9.8 Tf [(Correct Answer)] TJ ET 0.267 0.267 0.267 rg 538.152 345.558 42.723 0.750 re f 538.152 329.677 0.750 16.631 re f 580.125 329.677 0.750 16.631 re f 0.271 0.267 0.267 rg BT 543.402 335.703 Td /F4 9.8 Tf [(%)] TJ ET 0.267 0.267 0.267 rg 26.625 329.677 253.003 0.750 re f 26.625 313.795 0.750 16.631 re f 0.271 0.267 0.267 rg BT 31.875 319.822 Td /F1 9.8 Tf [(DMD is:)] TJ ET 0.267 0.267 0.267 rg 278.878 329.677 260.024 0.750 re f 278.878 313.795 0.750 16.631 re f 0.271 0.267 0.267 rg BT 284.128 319.822 Td /F1 9.8 Tf [(The most common form of muscular dystrophy)] TJ ET 0.267 0.267 0.267 rg 538.152 329.677 42.723 0.750 re f 538.152 313.795 0.750 16.631 re f 580.125 313.795 0.750 16.631 re f 0.271 0.267 0.267 rg BT 543.402 319.822 Td /F1 9.8 Tf [(63.0)] TJ ET 0.267 0.267 0.267 rg 26.625 313.795 253.003 0.750 re f 26.625 290.283 0.750 24.262 re f 0.271 0.267 0.267 rg BT 31.875 303.940 Td /F1 9.8 Tf [(DMD is a genetic condition that weakens the:)] TJ ET 0.267 0.267 0.267 rg 278.878 313.795 260.024 0.750 re f 278.878 290.283 0.750 24.262 re f 0.271 0.267 0.267 rg BT 284.128 303.940 Td /F1 9.8 Tf [(All of the above \(arm and leg, heart, and breathing )] TJ ET BT 284.128 296.309 Td /F1 9.8 Tf [(muscles\))] TJ ET 0.267 0.267 0.267 rg 538.152 313.795 42.723 0.750 re f 538.152 290.283 0.750 24.262 re f 580.125 290.283 0.750 24.262 re f 0.271 0.267 0.267 rg BT 543.402 303.940 Td /F1 9.8 Tf [(40.7)] TJ ET 0.267 0.267 0.267 rg 26.625 290.283 253.003 0.750 re f 26.625 266.770 0.750 24.262 re f 0.271 0.267 0.267 rg BT 31.875 280.428 Td /F1 9.8 Tf [(DMD can happen:)] TJ ET 0.267 0.267 0.267 rg 278.878 290.283 260.024 0.750 re f 278.878 266.770 0.750 24.262 re f 0.271 0.267 0.267 rg BT 284.128 280.428 Td /F1 9.8 Tf [(All of the above \(in families with or without a relative with )] TJ ET BT 284.128 272.797 Td /F1 9.8 Tf [(DMD, in all racial backgrounds\))] TJ ET 0.267 0.267 0.267 rg 538.152 290.283 42.723 0.750 re f 538.152 266.770 0.750 24.262 re f 580.125 266.770 0.750 24.262 re f 0.271 0.267 0.267 rg BT 543.402 280.428 Td /F1 9.8 Tf [(60.7)] TJ ET 0.267 0.267 0.267 rg 26.625 266.770 253.003 0.750 re f 26.625 250.889 0.750 16.631 re f 0.271 0.267 0.267 rg BT 31.875 256.915 Td /F1 9.8 Tf [(Screening finds affected infants before symptoms start:)] TJ ET 0.267 0.267 0.267 rg 278.878 266.770 260.024 0.750 re f 278.878 250.889 0.750 16.631 re f 0.271 0.267 0.267 rg BT 284.128 256.915 Td /F1 9.8 Tf [(True)] TJ ET 0.267 0.267 0.267 rg 538.152 266.770 42.723 0.750 re f 538.152 250.889 0.750 16.631 re f 580.125 250.889 0.750 16.631 re f 0.271 0.267 0.267 rg BT 543.402 256.915 Td /F1 9.8 Tf [(92.8)] TJ ET 0.267 0.267 0.267 rg 26.625 250.889 253.003 0.750 re f 26.625 235.008 253.003 0.750 re f 26.625 235.008 0.750 16.631 re f 0.271 0.267 0.267 rg BT 31.875 241.034 Td /F1 9.8 Tf [(Once a child is found to have DMD:)] TJ ET 0.267 0.267 0.267 rg 278.878 250.889 260.024 0.750 re f 278.878 235.008 260.024 0.750 re f 278.878 235.008 0.750 16.631 re f 0.271 0.267 0.267 rg BT 284.128 241.034 Td /F1 9.8 Tf [(Treatment may slow down the progress of the disorder)] TJ ET 0.267 0.267 0.267 rg 538.152 250.889 42.723 0.750 re f 538.152 235.008 42.723 0.750 re f 538.152 235.008 0.750 16.631 re f 580.125 235.008 0.750 16.631 re f 0.271 0.267 0.267 rg BT 543.402 241.034 Td /F1 9.8 Tf [(69.9)] TJ ET BT 26.250 180.109 Td /F1 9.8 Tf [(Over 95% of parents felt they understood the study information well and their answers to the knowledge questions generally )] TJ ET BT 26.250 168.204 Td /F1 9.8 Tf [(reflected this \()] TJ ET BT 87.480 168.204 Td /F4 9.8 Tf [(Table 3)] TJ ET BT 121.078 168.204 Td /F1 9.8 Tf [(\). The range of correct responses from a participant was 0 to 5, with a mean of 3.27 \(SD. = 1.4\). About )] TJ ET BT 26.250 156.300 Td /F1 9.8 Tf [(three-quarters \(74.6%\) of respondents answered at least three of the five questions correctly. To determine whether the amount )] TJ ET BT 26.250 144.395 Td /F1 9.8 Tf [(of time between screening and completion of the survey influenced the number of questions answered correctly, knowledge )] TJ ET BT 26.250 132.490 Td /F1 9.8 Tf [(question results were compared between parents who answered the questionnaire from the first mailing and those who )] TJ ET BT 26.250 120.585 Td /F1 9.8 Tf [(answered from the second mailing. The mean number of questions answered correctly between these two groups differed )] TJ ET BT 26.250 108.681 Td /F1 9.8 Tf [(statistically \()] TJ ET BT 79.339 108.681 Td /F5 9.8 Tf [(P)] TJ ET BT 85.842 108.681 Td /F1 9.8 Tf [( < 0.01\), with those answering the questionnaire from the first mailing \(n = 60; mean= 3.57; SD = 1.2\) answering )] TJ ET BT 26.250 96.776 Td /F1 9.8 Tf [(more questions correctly than those who answered them at a later date \(n = 61; mean = 2.90; SD = 1.4\). Overall, these data )] TJ ET BT 26.250 84.871 Td /F1 9.8 Tf [(showed that most parents had a good understanding of the information and also suggested that parents likely had an even )] TJ ET BT 26.250 72.966 Td /F1 9.8 Tf [(better understanding of the risks and benefits of DMD screening at the time they made the decision to screen.)] TJ ET BT 26.250 53.562 Td /F5 9.8 Tf [(Parental Experience and Opinions)] TJ ET Q q 0.000 0.000 0.000 rg BT 291.710 19.825 Td /F1 11.0 Tf [(5)] TJ ET BT 25.000 19.825 Td /F1 11.0 Tf [(PLOS Currents Muscular Dystrophy)] TJ ET Q endstream endobj 311 0 obj << /Type /Page /Parent 3 0 R /Contents 312 0 R >> endobj 312 0 obj << /Length 56071 >> stream 0.271 0.267 0.267 rg q 15.000 22.471 577.500 754.529 re W n 0.271 0.267 0.267 rg BT 26.250 767.476 Td /F1 9.8 Tf [(A large majority of respondents whose sons were screened reported a positive experience, with almost 90% of parents )] TJ ET BT 26.250 755.571 Td /F1 9.8 Tf [(indicating that screening for DMD was worthwhile \()] TJ ET BT 245.147 755.571 Td /F4 9.8 Tf [(Table 4)] TJ ET BT 278.746 755.571 Td /F1 9.8 Tf [(\). Another indication of a positive experience was that the majority of )] TJ ET BT 26.250 743.667 Td /F1 9.8 Tf [(parents also reported that they would screen future sons and recommend screening to other parents.)] TJ ET BT 26.250 724.262 Td /F1 9.8 Tf [(Approximately 95% of parents reported that the screening experience was not stressful \()] TJ ET BT 407.212 724.262 Td /F4 9.8 Tf [(Table 4)] TJ ET BT 440.810 724.262 Td /F1 9.8 Tf [(\). The low stress experienced )] TJ ET BT 26.250 712.357 Td /F1 9.8 Tf [(by parents came as little surprise, as none of the parents received a positive screening result.)] TJ ET q 26.250 688.740 555.000 13.736 re W n 0.271 0.267 0.267 rg BT 26.250 691.487 Td /F1 9.8 Tf [(Table 4. Parent, participant, and provider experiences and opinions of Duchenne muscular dystrophy screening)] TJ ET Q 1.000 1.000 1.000 rg 26.250 150.804 555.000 530.436 re f 0.965 0.965 0.965 rg 27.000 668.210 71.290 12.280 re f 0.267 0.267 0.267 rg 26.625 680.115 71.665 0.750 re f 26.625 667.835 0.750 13.030 re f 0.271 0.267 0.267 rg BT 31.500 670.966 Td /F4 9.8 Tf [(Group)] TJ ET 0.965 0.965 0.965 rg 98.290 668.210 244.358 12.280 re f 0.267 0.267 0.267 rg 98.290 680.115 244.358 0.750 re f 0.271 0.267 0.267 rg BT 102.790 670.966 Td /F4 9.8 Tf [(Question)] TJ ET 0.965 0.965 0.965 rg 342.648 668.210 139.690 12.280 re f 0.267 0.267 0.267 rg 342.648 680.115 139.690 0.750 re f 0.271 0.267 0.267 rg BT 347.148 670.966 Td /F4 9.8 Tf [(Answer)] TJ ET 0.965 0.965 0.965 rg 482.337 668.210 98.163 12.280 re f 0.267 0.267 0.267 rg 482.337 680.115 98.538 0.750 re f 580.125 667.835 0.750 13.030 re f 0.271 0.267 0.267 rg BT 486.837 670.966 Td /F4 9.8 Tf [(%)] TJ ET 0.267 0.267 0.267 rg 26.625 667.835 72.040 0.750 re f 26.625 636.691 0.750 31.894 re f 0.271 0.267 0.267 rg BT 31.875 657.980 Td /F1 9.8 Tf [(Parents)] TJ ET 0.267 0.267 0.267 rg 97.915 667.835 245.108 0.750 re f 97.915 636.691 0.750 31.894 re f 0.271 0.267 0.267 rg BT 103.165 657.980 Td /F1 9.8 Tf [(Do you think boys should be screened for DMD? \(n = )] TJ ET BT 103.165 650.349 Td /F1 9.8 Tf [(138\))] TJ ET 0.267 0.267 0.267 rg 342.273 667.835 140.440 0.750 re f 342.273 636.691 0.750 31.894 re f 0.271 0.267 0.267 rg BT 347.523 657.980 Td /F1 9.8 Tf [(Yes)] TJ ET BT 347.523 650.349 Td /F1 9.8 Tf [(No)] TJ ET BT 347.523 642.718 Td /F1 9.8 Tf [(Dont Know)] TJ ET 0.267 0.267 0.267 rg 481.962 667.835 98.913 0.750 re f 481.962 636.691 0.750 31.894 re f 580.125 636.691 0.750 31.894 re f 0.271 0.267 0.267 rg BT 487.212 657.980 Td /F1 9.8 Tf [(65.2)] TJ ET BT 487.212 650.349 Td /F1 9.8 Tf [(0.0)] TJ ET BT 487.212 642.718 Td /F1 9.8 Tf [(34.8)] TJ ET 0.267 0.267 0.267 rg 26.625 636.691 72.040 0.750 re f 26.625 590.285 0.750 47.156 re f 97.915 636.691 245.108 0.750 re f 97.915 590.285 0.750 47.156 re f 0.271 0.267 0.267 rg BT 103.165 626.836 Td /F1 9.8 Tf [(If yes, when should they be screened? \(n = 89\))] TJ ET 0.267 0.267 0.267 rg 342.273 636.691 140.440 0.750 re f 342.273 590.285 0.750 47.156 re f 0.271 0.267 0.267 rg BT 347.523 626.836 Td /F1 9.8 Tf [(Right after birth)] TJ ET BT 347.523 619.205 Td /F1 9.8 Tf [(Between 6 and 15 months of )] TJ ET BT 347.523 611.574 Td /F1 9.8 Tf [(age)] TJ ET BT 347.523 603.943 Td /F1 9.8 Tf [(When symptoms start)] TJ ET BT 347.523 596.311 Td /F1 9.8 Tf [(Other)] TJ ET 0.267 0.267 0.267 rg 481.962 636.691 98.913 0.750 re f 481.962 590.285 0.750 47.156 re f 580.125 590.285 0.750 47.156 re f 0.271 0.267 0.267 rg BT 487.212 626.836 Td /F1 9.8 Tf [(49.4)] TJ ET BT 487.212 619.205 Td /F1 9.8 Tf [(46.1 )] TJ ET BT 487.212 611.574 Td /F1 9.8 Tf [(0.0)] TJ ET BT 487.212 603.943 Td /F1 9.8 Tf [(4.5)] TJ ET 0.267 0.267 0.267 rg 26.625 590.285 72.040 0.750 re f 26.625 559.141 0.750 31.894 re f 97.915 590.285 245.108 0.750 re f 97.915 559.141 0.750 31.894 re f 0.271 0.267 0.267 rg BT 103.165 580.430 Td /F1 9.8 Tf [(Should screening be required or optional? \(n = 138\))] TJ ET 0.267 0.267 0.267 rg 342.273 590.285 140.440 0.750 re f 342.273 559.141 0.750 31.894 re f 0.271 0.267 0.267 rg BT 347.523 580.430 Td /F1 9.8 Tf [(Required)] TJ ET BT 347.523 572.799 Td /F1 9.8 Tf [(Optional)] TJ ET BT 347.523 565.168 Td /F1 9.8 Tf [(No Opinion)] TJ ET 0.267 0.267 0.267 rg 481.962 590.285 98.913 0.750 re f 481.962 559.141 0.750 31.894 re f 580.125 559.141 0.750 31.894 re f 0.271 0.267 0.267 rg BT 487.212 580.430 Td /F1 9.8 Tf [(12.3)] TJ ET BT 487.212 572.799 Td /F1 9.8 Tf [(78.3)] TJ ET BT 487.212 565.168 Td /F1 9.8 Tf [(9.4)] TJ ET 0.267 0.267 0.267 rg 26.625 559.141 72.040 0.750 re f 26.625 527.998 0.750 31.894 re f 97.915 559.141 245.108 0.750 re f 97.915 527.998 0.750 31.894 re f 0.271 0.267 0.267 rg BT 103.165 549.286 Td /F1 9.8 Tf [(What describes your overall experience with DMD )] TJ ET BT 103.165 541.655 Td /F1 9.8 Tf [(screening? \(n = 137\))] TJ ET 0.267 0.267 0.267 rg 342.273 559.141 140.440 0.750 re f 342.273 527.998 0.750 31.894 re f 0.271 0.267 0.267 rg BT 347.523 549.286 Td /F1 9.8 Tf [(Very/Somewhat satified)] TJ ET BT 347.523 541.655 Td /F1 9.8 Tf [(Neutral)] TJ ET BT 347.523 534.024 Td /F1 9.8 Tf [(Very/Somewhat dissatisfied)] TJ ET 0.267 0.267 0.267 rg 481.962 559.141 98.913 0.750 re f 481.962 527.998 0.750 31.894 re f 580.125 527.998 0.750 31.894 re f 0.271 0.267 0.267 rg BT 487.212 549.286 Td /F1 9.8 Tf [(73.7)] TJ ET BT 487.212 541.655 Td /F1 9.8 Tf [(16.1)] TJ ET BT 487.212 534.024 Td /F1 9.8 Tf [(9.5)] TJ ET 0.267 0.267 0.267 rg 26.625 527.998 72.040 0.750 re f 26.625 496.854 0.750 31.894 re f 97.915 527.998 245.108 0.750 re f 97.915 496.854 0.750 31.894 re f 0.271 0.267 0.267 rg BT 103.165 518.143 Td /F1 9.8 Tf [(How stressful did you find your experience with DMD )] TJ ET BT 103.165 510.511 Td /F1 9.8 Tf [(screening \(n = 138\))] TJ ET 0.267 0.267 0.267 rg 342.273 527.998 140.440 0.750 re f 342.273 496.854 0.750 31.894 re f 0.271 0.267 0.267 rg BT 347.523 518.143 Td /F1 9.8 Tf [(Not at all/A little stressful)] TJ ET BT 347.523 510.511 Td /F1 9.8 Tf [(Somewhat stressful)] TJ ET BT 347.523 502.880 Td /F1 9.8 Tf [(Extremely/Very stressful)] TJ ET 0.267 0.267 0.267 rg 481.962 527.998 98.913 0.750 re f 481.962 496.854 0.750 31.894 re f 580.125 496.854 0.750 31.894 re f 0.271 0.267 0.267 rg BT 487.212 518.143 Td /F1 9.8 Tf [(95.6)] TJ ET BT 487.212 510.511 Td /F1 9.8 Tf [(4.3)] TJ ET BT 487.212 502.880 Td /F1 9.8 Tf [(0.0)] TJ ET 0.267 0.267 0.267 rg 26.625 496.854 72.040 0.750 re f 26.625 480.973 0.750 16.631 re f 0.271 0.267 0.267 rg BT 31.875 486.999 Td /F4 9.8 Tf [(Group)] TJ ET 0.267 0.267 0.267 rg 97.915 496.854 245.108 0.750 re f 97.915 480.973 0.750 16.631 re f 0.271 0.267 0.267 rg BT 103.165 486.999 Td /F4 9.8 Tf [(Statement)] TJ ET 0.267 0.267 0.267 rg 342.273 496.854 140.440 0.750 re f 342.273 480.973 0.750 16.631 re f 0.271 0.267 0.267 rg BT 347.523 486.999 Td /F4 9.8 Tf [(% Disagreement*)] TJ ET 0.267 0.267 0.267 rg 481.962 496.854 98.913 0.750 re f 481.962 480.973 0.750 16.631 re f 580.125 480.973 0.750 16.631 re f 0.271 0.267 0.267 rg BT 487.212 486.999 Td /F4 9.8 Tf [(% Agreement)] TJ ET 0.267 0.267 0.267 rg 26.625 480.973 72.040 0.750 re f 26.625 465.091 0.750 16.631 re f 0.271 0.267 0.267 rg BT 31.875 471.118 Td /F1 9.8 Tf [(Parents)] TJ ET 0.267 0.267 0.267 rg 97.915 480.973 245.108 0.750 re f 97.915 465.091 0.750 16.631 re f 0.271 0.267 0.267 rg BT 103.165 471.118 Td /F1 9.8 Tf [(DMD screening was worthwhile. \(n = 138\))] TJ ET 0.267 0.267 0.267 rg 342.273 480.973 140.440 0.750 re f 342.273 465.091 0.750 16.631 re f 0.271 0.267 0.267 rg BT 347.523 471.118 Td /F1 9.8 Tf [(0.0)] TJ ET 0.267 0.267 0.267 rg 481.962 480.973 98.913 0.750 re f 481.962 465.091 0.750 16.631 re f 580.125 465.091 0.750 16.631 re f 0.271 0.267 0.267 rg BT 487.212 471.118 Td /F1 9.8 Tf [(87.0)] TJ ET 0.267 0.267 0.267 rg 26.625 465.091 72.040 0.750 re f 26.625 441.579 0.750 24.262 re f 97.915 465.091 245.108 0.750 re f 97.915 441.579 0.750 24.262 re f 0.271 0.267 0.267 rg BT 103.165 455.236 Td /F1 9.8 Tf [(It is important for baby boys to be screened for DMD. )] TJ ET BT 103.165 447.605 Td /F1 9.8 Tf [(\(n = 135\))] TJ ET 0.267 0.267 0.267 rg 342.273 465.091 140.440 0.750 re f 342.273 441.579 0.750 24.262 re f 0.271 0.267 0.267 rg BT 347.523 455.236 Td /F1 9.8 Tf [(0.0)] TJ ET 0.267 0.267 0.267 rg 481.962 465.091 98.913 0.750 re f 481.962 441.579 0.750 24.262 re f 580.125 441.579 0.750 24.262 re f 0.271 0.267 0.267 rg BT 487.212 455.236 Td /F1 9.8 Tf [(66.7)] TJ ET 0.267 0.267 0.267 rg 26.625 441.579 72.040 0.750 re f 26.625 418.066 0.750 24.262 re f 97.915 441.579 245.108 0.750 re f 97.915 418.066 0.750 24.262 re f 0.271 0.267 0.267 rg BT 103.165 431.724 Td /F1 9.8 Tf [(Babies should be screened for as many disorders as )] TJ ET BT 103.165 424.093 Td /F1 9.8 Tf [(possible even if it leads to false alarms. \(n = 137\))] TJ ET 0.267 0.267 0.267 rg 342.273 441.579 140.440 0.750 re f 342.273 418.066 0.750 24.262 re f 0.271 0.267 0.267 rg BT 347.523 431.724 Td /F1 9.8 Tf [(24.9)] TJ ET 0.267 0.267 0.267 rg 481.962 441.579 98.913 0.750 re f 481.962 418.066 0.750 24.262 re f 580.125 418.066 0.750 24.262 re f 0.271 0.267 0.267 rg BT 487.212 431.724 Td /F1 9.8 Tf [(44.6)] TJ ET 0.267 0.267 0.267 rg 26.625 418.066 72.040 0.750 re f 26.625 394.554 0.750 24.262 re f 97.915 418.066 245.108 0.750 re f 97.915 394.554 0.750 24.262 re f 0.271 0.267 0.267 rg BT 103.165 408.211 Td /F1 9.8 Tf [(If I had another boy, I would want him to have DMD )] TJ ET BT 103.165 400.580 Td /F1 9.8 Tf [(screening. \(n = 137\))] TJ ET 0.267 0.267 0.267 rg 342.273 418.066 140.440 0.750 re f 342.273 394.554 0.750 24.262 re f 0.271 0.267 0.267 rg BT 347.523 408.211 Td /F1 9.8 Tf [(2.2)] TJ ET 0.267 0.267 0.267 rg 481.962 418.066 98.913 0.750 re f 481.962 394.554 0.750 24.262 re f 580.125 394.554 0.750 24.262 re f 0.271 0.267 0.267 rg BT 487.212 408.211 Td /F1 9.8 Tf [(76.6)] TJ ET 0.267 0.267 0.267 rg 26.625 394.554 72.040 0.750 re f 26.625 371.041 0.750 24.262 re f 97.915 394.554 245.108 0.750 re f 97.915 371.041 0.750 24.262 re f 0.271 0.267 0.267 rg BT 103.165 384.699 Td /F1 9.8 Tf [(I would recommend DMD screening to other parens )] TJ ET BT 103.165 377.068 Td /F1 9.8 Tf [(\(n = 137\))] TJ ET 0.267 0.267 0.267 rg 342.273 394.554 140.440 0.750 re f 342.273 371.041 0.750 24.262 re f 0.271 0.267 0.267 rg BT 347.523 384.699 Td /F1 9.8 Tf [(2.9)] TJ ET 0.267 0.267 0.267 rg 481.962 394.554 98.913 0.750 re f 481.962 371.041 0.750 24.262 re f 580.125 371.041 0.750 24.262 re f 0.271 0.267 0.267 rg BT 487.212 384.699 Td /F1 9.8 Tf [(61.4)] TJ ET 0.267 0.267 0.267 rg 26.625 371.041 72.040 0.750 re f 26.625 347.529 0.750 24.262 re f 0.271 0.267 0.267 rg BT 31.875 361.186 Td /F1 9.8 Tf [(Providers)] TJ ET 0.267 0.267 0.267 rg 97.915 371.041 245.108 0.750 re f 97.915 347.529 0.750 24.262 re f 0.271 0.267 0.267 rg BT 103.165 361.186 Td /F1 9.8 Tf [(DMD screening can be easily incorporated into )] TJ ET BT 103.165 353.555 Td /F1 9.8 Tf [(routine practive \(n = 23\))] TJ ET 0.267 0.267 0.267 rg 342.273 371.041 140.440 0.750 re f 342.273 347.529 0.750 24.262 re f 0.271 0.267 0.267 rg BT 347.523 361.186 Td /F1 9.8 Tf [(0.0)] TJ ET 0.267 0.267 0.267 rg 481.962 371.041 98.913 0.750 re f 481.962 347.529 0.750 24.262 re f 580.125 347.529 0.750 24.262 re f 0.271 0.267 0.267 rg BT 487.212 361.186 Td /F1 9.8 Tf [(100)] TJ ET 0.267 0.267 0.267 rg 26.625 347.529 72.040 0.750 re f 26.625 324.016 0.750 24.262 re f 97.915 347.529 245.108 0.750 re f 97.915 324.016 0.750 24.262 re f 0.271 0.267 0.267 rg BT 103.165 337.674 Td /F1 9.8 Tf [(Collecting blood for the DMD screening test is not a )] TJ ET BT 103.165 330.043 Td /F1 9.8 Tf [(burden \(n = 21\))] TJ ET 0.267 0.267 0.267 rg 342.273 347.529 140.440 0.750 re f 342.273 324.016 0.750 24.262 re f 0.271 0.267 0.267 rg BT 347.523 337.674 Td /F1 9.8 Tf [(0.0)] TJ ET 0.267 0.267 0.267 rg 481.962 347.529 98.913 0.750 re f 481.962 324.016 0.750 24.262 re f 580.125 324.016 0.750 24.262 re f 0.271 0.267 0.267 rg BT 487.212 337.674 Td /F1 9.8 Tf [(100)] TJ ET 0.267 0.267 0.267 rg 26.625 324.016 72.040 0.750 re f 26.625 300.504 0.750 24.262 re f 97.915 324.016 245.108 0.750 re f 97.915 300.504 0.750 24.262 re f 0.271 0.267 0.267 rg BT 103.165 314.161 Td /F1 9.8 Tf [(Obtaining informed consent for DMD screening is not )] TJ ET BT 103.165 306.530 Td /F1 9.8 Tf [(a burden. \(n = 22\))] TJ ET 0.267 0.267 0.267 rg 342.273 324.016 140.440 0.750 re f 342.273 300.504 0.750 24.262 re f 0.271 0.267 0.267 rg BT 347.523 314.161 Td /F1 9.8 Tf [(4.5)] TJ ET 0.267 0.267 0.267 rg 481.962 324.016 98.913 0.750 re f 481.962 300.504 0.750 24.262 re f 580.125 300.504 0.750 24.262 re f 0.271 0.267 0.267 rg BT 487.212 314.161 Td /F1 9.8 Tf [(72.7)] TJ ET 0.267 0.267 0.267 rg 26.625 300.504 72.040 0.750 re f 26.625 276.991 0.750 24.262 re f 97.915 300.504 245.108 0.750 re f 97.915 276.991 0.750 24.262 re f 0.271 0.267 0.267 rg BT 103.165 290.649 Td /F1 9.8 Tf [(I am comfortable discussing DMD screening with my )] TJ ET BT 103.165 283.018 Td /F1 9.8 Tf [(patients. \(n = 19\))] TJ ET 0.267 0.267 0.267 rg 342.273 300.504 140.440 0.750 re f 342.273 276.991 0.750 24.262 re f 0.271 0.267 0.267 rg BT 347.523 290.649 Td /F1 9.8 Tf [(0.0)] TJ ET 0.267 0.267 0.267 rg 481.962 300.504 98.913 0.750 re f 481.962 276.991 0.750 24.262 re f 580.125 276.991 0.750 24.262 re f 0.271 0.267 0.267 rg BT 487.212 290.649 Td /F1 9.8 Tf [(63.2)] TJ ET 0.267 0.267 0.267 rg 26.625 276.991 72.040 0.750 re f 26.625 253.479 0.750 24.263 re f 97.915 276.991 245.108 0.750 re f 97.915 253.479 0.750 24.263 re f 0.271 0.267 0.267 rg BT 103.165 267.136 Td /F1 9.8 Tf [(I have the necessary information to discuss DMD )] TJ ET BT 103.165 259.505 Td /F1 9.8 Tf [(screening with my patients. \(n = 19\))] TJ ET 0.267 0.267 0.267 rg 342.273 276.991 140.440 0.750 re f 342.273 253.479 0.750 24.263 re f 0.271 0.267 0.267 rg BT 347.523 267.136 Td /F1 9.8 Tf [(5.3)] TJ ET 0.267 0.267 0.267 rg 481.962 276.991 98.913 0.750 re f 481.962 253.479 0.750 24.263 re f 580.125 253.479 0.750 24.263 re f 0.271 0.267 0.267 rg BT 487.212 267.136 Td /F1 9.8 Tf [(79.0)] TJ ET 0.267 0.267 0.267 rg 26.625 253.479 72.040 0.750 re f 26.625 237.598 0.750 16.631 re f 97.915 253.479 245.108 0.750 re f 97.915 237.598 0.750 16.631 re f 0.271 0.267 0.267 rg BT 103.165 243.624 Td /F1 9.8 Tf [(I am in favor of screening for DMD. \(n = 22\))] TJ ET 0.267 0.267 0.267 rg 342.273 253.479 140.440 0.750 re f 342.273 237.598 0.750 16.631 re f 0.271 0.267 0.267 rg BT 347.523 243.624 Td /F1 9.8 Tf [(0.0)] TJ ET 0.267 0.267 0.267 rg 481.962 253.479 98.913 0.750 re f 481.962 237.598 0.750 16.631 re f 580.125 237.598 0.750 16.631 re f 0.271 0.267 0.267 rg BT 487.212 243.624 Td /F1 9.8 Tf [(91.0)] TJ ET 0.267 0.267 0.267 rg 26.625 237.598 72.040 0.750 re f 26.625 214.085 0.750 24.262 re f 97.915 237.598 245.108 0.750 re f 97.915 214.085 0.750 24.262 re f 0.271 0.267 0.267 rg BT 103.165 227.743 Td /F1 9.8 Tf [(I am satisfied with the information provided to )] TJ ET BT 103.165 220.111 Td /F1 9.8 Tf [(educate parents about DMD screening. \(n = 20\))] TJ ET 0.267 0.267 0.267 rg 342.273 237.598 140.440 0.750 re f 342.273 214.085 0.750 24.262 re f 0.271 0.267 0.267 rg BT 347.523 227.743 Td /F1 9.8 Tf [(0.0)] TJ ET 0.267 0.267 0.267 rg 481.962 237.598 98.913 0.750 re f 481.962 214.085 0.750 24.262 re f 580.125 214.085 0.750 24.262 re f 0.271 0.267 0.267 rg BT 487.212 227.743 Td /F1 9.8 Tf [(95.0)] TJ ET 0.267 0.267 0.267 rg 26.625 214.085 72.040 0.750 re f 26.625 190.573 0.750 24.263 re f 97.915 214.085 245.108 0.750 re f 97.915 190.573 0.750 24.263 re f 0.271 0.267 0.267 rg BT 103.165 204.230 Td /F1 9.8 Tf [(The benefits of DMD screening are greater than the )] TJ ET BT 103.165 196.599 Td /F1 9.8 Tf [(risks. \(n = 22\))] TJ ET 0.267 0.267 0.267 rg 342.273 214.085 140.440 0.750 re f 342.273 190.573 0.750 24.263 re f 0.271 0.267 0.267 rg BT 347.523 204.230 Td /F1 9.8 Tf [(0.0)] TJ ET 0.267 0.267 0.267 rg 481.962 214.085 98.913 0.750 re f 481.962 190.573 0.750 24.263 re f 580.125 190.573 0.750 24.263 re f 0.271 0.267 0.267 rg BT 487.212 204.230 Td /F1 9.8 Tf [(90.9)] TJ ET 0.267 0.267 0.267 rg 26.625 190.573 71.665 0.750 re f 98.290 190.573 244.358 0.750 re f 342.648 190.573 139.690 0.750 re f 482.337 190.573 98.538 0.750 re f 26.625 167.060 0.750 24.263 re f 580.125 167.060 0.750 24.263 re f 0.271 0.267 0.267 rg BT 31.875 180.718 Td /F1 9.8 Tf [(*% Disagreement reflects the percentage of respondents who indicated that they disagreed or strongly disagreed with the )] TJ ET BT 31.875 173.086 Td /F1 9.8 Tf [(statement.)] TJ ET 0.267 0.267 0.267 rg 26.625 167.060 71.665 0.750 re f 26.625 151.179 71.665 0.750 re f 98.290 167.060 244.358 0.750 re f 98.290 151.179 244.358 0.750 re f 342.648 167.060 139.690 0.750 re f 342.648 151.179 139.690 0.750 re f 482.337 167.060 98.538 0.750 re f 482.337 151.179 98.538 0.750 re f 26.625 151.179 0.750 16.631 re f 580.125 151.179 0.750 16.631 re f 0.271 0.267 0.267 rg BT 31.875 157.205 Td /F1 9.8 Tf [(% Agreement reflects the percentage of respondents who indicated that they agreed or strongly agreed with the statement.)] TJ ET BT 26.250 96.280 Td /F1 9.8 Tf [(The majority of parents responding to the questionnaire were supportive of DMD screening \()] TJ ET BT 423.455 96.280 Td /F4 9.8 Tf [(Table 4)] TJ ET BT 457.054 96.280 Td /F1 9.8 Tf [(\). Parents were interested )] TJ ET BT 26.250 84.375 Td /F1 9.8 Tf [(in the option of DMD screening, particularly when performed along with routine testing. Written comments of parents indicated )] TJ ET BT 26.250 72.471 Td /F1 9.8 Tf [(that they liked the convenience of including DMD screening with other tests, particularly as no additional needle stick was )] TJ ET BT 26.250 60.566 Td /F1 9.8 Tf [(needed. Most parents thought screening should be optional, but they were evenly divided on the timing of screening, with half )] TJ ET BT 26.250 48.661 Td /F1 9.8 Tf [(preferring it to be part of newborn screening and the other half preferring it to be done with other tests later in infancy. Although )] TJ ET BT 26.250 36.756 Td /F1 9.8 Tf [(a majority of parents thought that identifying infants through screening was important, one-third did not think that screening for )] TJ ET Q q 15.000 22.471 577.500 754.529 re W n 0.271 0.267 0.267 rg BT 26.250 767.476 Td /F1 9.8 Tf [(A large majority of respondents whose sons were screened reported a positive experience, with almost 90% of parents )] TJ ET BT 26.250 755.571 Td /F1 9.8 Tf [(indicating that screening for DMD was worthwhile \()] TJ ET BT 245.147 755.571 Td /F4 9.8 Tf [(Table 4)] TJ ET BT 278.746 755.571 Td /F1 9.8 Tf [(\). Another indication of a positive experience was that the majority of )] TJ ET BT 26.250 743.667 Td /F1 9.8 Tf [(parents also reported that they would screen future sons and recommend screening to other parents.)] TJ ET BT 26.250 724.262 Td /F1 9.8 Tf [(Approximately 95% of parents reported that the screening experience was not stressful \()] TJ ET BT 407.212 724.262 Td /F4 9.8 Tf [(Table 4)] TJ ET BT 440.810 724.262 Td /F1 9.8 Tf [(\). The low stress experienced )] TJ ET BT 26.250 712.357 Td /F1 9.8 Tf [(by parents came as little surprise, as none of the parents received a positive screening result.)] TJ ET q 26.250 688.740 555.000 13.736 re W n 0.271 0.267 0.267 rg BT 26.250 691.487 Td /F1 9.8 Tf [(Table 4. Parent, participant, and provider experiences and opinions of Duchenne muscular dystrophy screening)] TJ ET Q 1.000 1.000 1.000 rg 26.250 150.804 555.000 530.436 re f 0.965 0.965 0.965 rg 27.000 668.210 71.290 12.280 re f 0.267 0.267 0.267 rg 26.625 680.115 71.665 0.750 re f 26.625 667.835 0.750 13.030 re f 0.271 0.267 0.267 rg BT 31.500 670.966 Td /F4 9.8 Tf [(Group)] TJ ET 0.965 0.965 0.965 rg 98.290 668.210 244.358 12.280 re f 0.267 0.267 0.267 rg 98.290 680.115 244.358 0.750 re f 0.271 0.267 0.267 rg BT 102.790 670.966 Td /F4 9.8 Tf [(Question)] TJ ET 0.965 0.965 0.965 rg 342.648 668.210 139.690 12.280 re f 0.267 0.267 0.267 rg 342.648 680.115 139.690 0.750 re f 0.271 0.267 0.267 rg BT 347.148 670.966 Td /F4 9.8 Tf [(Answer)] TJ ET 0.965 0.965 0.965 rg 482.337 668.210 98.163 12.280 re f 0.267 0.267 0.267 rg 482.337 680.115 98.538 0.750 re f 580.125 667.835 0.750 13.030 re f 0.271 0.267 0.267 rg BT 486.837 670.966 Td /F4 9.8 Tf [(%)] TJ ET 0.267 0.267 0.267 rg 26.625 667.835 72.040 0.750 re f 26.625 636.691 0.750 31.894 re f 0.271 0.267 0.267 rg BT 31.875 657.980 Td /F1 9.8 Tf [(Parents)] TJ ET 0.267 0.267 0.267 rg 97.915 667.835 245.108 0.750 re f 97.915 636.691 0.750 31.894 re f 0.271 0.267 0.267 rg BT 103.165 657.980 Td /F1 9.8 Tf [(Do you think boys should be screened for DMD? \(n = )] TJ ET BT 103.165 650.349 Td /F1 9.8 Tf [(138\))] TJ ET 0.267 0.267 0.267 rg 342.273 667.835 140.440 0.750 re f 342.273 636.691 0.750 31.894 re f 0.271 0.267 0.267 rg BT 347.523 657.980 Td /F1 9.8 Tf [(Yes)] TJ ET BT 347.523 650.349 Td /F1 9.8 Tf [(No)] TJ ET BT 347.523 642.718 Td /F1 9.8 Tf [(Dont Know)] TJ ET 0.267 0.267 0.267 rg 481.962 667.835 98.913 0.750 re f 481.962 636.691 0.750 31.894 re f 580.125 636.691 0.750 31.894 re f 0.271 0.267 0.267 rg BT 487.212 657.980 Td /F1 9.8 Tf [(65.2)] TJ ET BT 487.212 650.349 Td /F1 9.8 Tf [(0.0)] TJ ET BT 487.212 642.718 Td /F1 9.8 Tf [(34.8)] TJ ET 0.267 0.267 0.267 rg 26.625 636.691 72.040 0.750 re f 26.625 590.285 0.750 47.156 re f 97.915 636.691 245.108 0.750 re f 97.915 590.285 0.750 47.156 re f 0.271 0.267 0.267 rg BT 103.165 626.836 Td /F1 9.8 Tf [(If yes, when should they be screened? \(n = 89\))] TJ ET 0.267 0.267 0.267 rg 342.273 636.691 140.440 0.750 re f 342.273 590.285 0.750 47.156 re f 0.271 0.267 0.267 rg BT 347.523 626.836 Td /F1 9.8 Tf [(Right after birth)] TJ ET BT 347.523 619.205 Td /F1 9.8 Tf [(Between 6 and 15 months of )] TJ ET BT 347.523 611.574 Td /F1 9.8 Tf [(age)] TJ ET BT 347.523 603.943 Td /F1 9.8 Tf [(When symptoms start)] TJ ET BT 347.523 596.311 Td /F1 9.8 Tf [(Other)] TJ ET 0.267 0.267 0.267 rg 481.962 636.691 98.913 0.750 re f 481.962 590.285 0.750 47.156 re f 580.125 590.285 0.750 47.156 re f 0.271 0.267 0.267 rg BT 487.212 626.836 Td /F1 9.8 Tf [(49.4)] TJ ET BT 487.212 619.205 Td /F1 9.8 Tf [(46.1 )] TJ ET BT 487.212 611.574 Td /F1 9.8 Tf [(0.0)] TJ ET BT 487.212 603.943 Td /F1 9.8 Tf [(4.5)] TJ ET 0.267 0.267 0.267 rg 26.625 590.285 72.040 0.750 re f 26.625 559.141 0.750 31.894 re f 97.915 590.285 245.108 0.750 re f 97.915 559.141 0.750 31.894 re f 0.271 0.267 0.267 rg BT 103.165 580.430 Td /F1 9.8 Tf [(Should screening be required or optional? \(n = 138\))] TJ ET 0.267 0.267 0.267 rg 342.273 590.285 140.440 0.750 re f 342.273 559.141 0.750 31.894 re f 0.271 0.267 0.267 rg BT 347.523 580.430 Td /F1 9.8 Tf [(Required)] TJ ET BT 347.523 572.799 Td /F1 9.8 Tf [(Optional)] TJ ET BT 347.523 565.168 Td /F1 9.8 Tf [(No Opinion)] TJ ET 0.267 0.267 0.267 rg 481.962 590.285 98.913 0.750 re f 481.962 559.141 0.750 31.894 re f 580.125 559.141 0.750 31.894 re f 0.271 0.267 0.267 rg BT 487.212 580.430 Td /F1 9.8 Tf [(12.3)] TJ ET BT 487.212 572.799 Td /F1 9.8 Tf [(78.3)] TJ ET BT 487.212 565.168 Td /F1 9.8 Tf [(9.4)] TJ ET 0.267 0.267 0.267 rg 26.625 559.141 72.040 0.750 re f 26.625 527.998 0.750 31.894 re f 97.915 559.141 245.108 0.750 re f 97.915 527.998 0.750 31.894 re f 0.271 0.267 0.267 rg BT 103.165 549.286 Td /F1 9.8 Tf [(What describes your overall experience with DMD )] TJ ET BT 103.165 541.655 Td /F1 9.8 Tf [(screening? \(n = 137\))] TJ ET 0.267 0.267 0.267 rg 342.273 559.141 140.440 0.750 re f 342.273 527.998 0.750 31.894 re f 0.271 0.267 0.267 rg BT 347.523 549.286 Td /F1 9.8 Tf [(Very/Somewhat satified)] TJ ET BT 347.523 541.655 Td /F1 9.8 Tf [(Neutral)] TJ ET BT 347.523 534.024 Td /F1 9.8 Tf [(Very/Somewhat dissatisfied)] TJ ET 0.267 0.267 0.267 rg 481.962 559.141 98.913 0.750 re f 481.962 527.998 0.750 31.894 re f 580.125 527.998 0.750 31.894 re f 0.271 0.267 0.267 rg BT 487.212 549.286 Td /F1 9.8 Tf [(73.7)] TJ ET BT 487.212 541.655 Td /F1 9.8 Tf [(16.1)] TJ ET BT 487.212 534.024 Td /F1 9.8 Tf [(9.5)] TJ ET 0.267 0.267 0.267 rg 26.625 527.998 72.040 0.750 re f 26.625 496.854 0.750 31.894 re f 97.915 527.998 245.108 0.750 re f 97.915 496.854 0.750 31.894 re f 0.271 0.267 0.267 rg BT 103.165 518.143 Td /F1 9.8 Tf [(How stressful did you find your experience with DMD )] TJ ET BT 103.165 510.511 Td /F1 9.8 Tf [(screening \(n = 138\))] TJ ET 0.267 0.267 0.267 rg 342.273 527.998 140.440 0.750 re f 342.273 496.854 0.750 31.894 re f 0.271 0.267 0.267 rg BT 347.523 518.143 Td /F1 9.8 Tf [(Not at all/A little stressful)] TJ ET BT 347.523 510.511 Td /F1 9.8 Tf [(Somewhat stressful)] TJ ET BT 347.523 502.880 Td /F1 9.8 Tf [(Extremely/Very stressful)] TJ ET 0.267 0.267 0.267 rg 481.962 527.998 98.913 0.750 re f 481.962 496.854 0.750 31.894 re f 580.125 496.854 0.750 31.894 re f 0.271 0.267 0.267 rg BT 487.212 518.143 Td /F1 9.8 Tf [(95.6)] TJ ET BT 487.212 510.511 Td /F1 9.8 Tf [(4.3)] TJ ET BT 487.212 502.880 Td /F1 9.8 Tf [(0.0)] TJ ET 0.267 0.267 0.267 rg 26.625 496.854 72.040 0.750 re f 26.625 480.973 0.750 16.631 re f 0.271 0.267 0.267 rg BT 31.875 486.999 Td /F4 9.8 Tf [(Group)] TJ ET 0.267 0.267 0.267 rg 97.915 496.854 245.108 0.750 re f 97.915 480.973 0.750 16.631 re f 0.271 0.267 0.267 rg BT 103.165 486.999 Td /F4 9.8 Tf [(Statement)] TJ ET 0.267 0.267 0.267 rg 342.273 496.854 140.440 0.750 re f 342.273 480.973 0.750 16.631 re f 0.271 0.267 0.267 rg BT 347.523 486.999 Td /F4 9.8 Tf [(% Disagreement*)] TJ ET 0.267 0.267 0.267 rg 481.962 496.854 98.913 0.750 re f 481.962 480.973 0.750 16.631 re f 580.125 480.973 0.750 16.631 re f 0.271 0.267 0.267 rg BT 487.212 486.999 Td /F4 9.8 Tf [(% Agreement)] TJ ET 0.267 0.267 0.267 rg 26.625 480.973 72.040 0.750 re f 26.625 465.091 0.750 16.631 re f 0.271 0.267 0.267 rg BT 31.875 471.118 Td /F1 9.8 Tf [(Parents)] TJ ET 0.267 0.267 0.267 rg 97.915 480.973 245.108 0.750 re f 97.915 465.091 0.750 16.631 re f 0.271 0.267 0.267 rg BT 103.165 471.118 Td /F1 9.8 Tf [(DMD screening was worthwhile. \(n = 138\))] TJ ET 0.267 0.267 0.267 rg 342.273 480.973 140.440 0.750 re f 342.273 465.091 0.750 16.631 re f 0.271 0.267 0.267 rg BT 347.523 471.118 Td /F1 9.8 Tf [(0.0)] TJ ET 0.267 0.267 0.267 rg 481.962 480.973 98.913 0.750 re f 481.962 465.091 0.750 16.631 re f 580.125 465.091 0.750 16.631 re f 0.271 0.267 0.267 rg BT 487.212 471.118 Td /F1 9.8 Tf [(87.0)] TJ ET 0.267 0.267 0.267 rg 26.625 465.091 72.040 0.750 re f 26.625 441.579 0.750 24.262 re f 97.915 465.091 245.108 0.750 re f 97.915 441.579 0.750 24.262 re f 0.271 0.267 0.267 rg BT 103.165 455.236 Td /F1 9.8 Tf [(It is important for baby boys to be screened for DMD. )] TJ ET BT 103.165 447.605 Td /F1 9.8 Tf [(\(n = 135\))] TJ ET 0.267 0.267 0.267 rg 342.273 465.091 140.440 0.750 re f 342.273 441.579 0.750 24.262 re f 0.271 0.267 0.267 rg BT 347.523 455.236 Td /F1 9.8 Tf [(0.0)] TJ ET 0.267 0.267 0.267 rg 481.962 465.091 98.913 0.750 re f 481.962 441.579 0.750 24.262 re f 580.125 441.579 0.750 24.262 re f 0.271 0.267 0.267 rg BT 487.212 455.236 Td /F1 9.8 Tf [(66.7)] TJ ET 0.267 0.267 0.267 rg 26.625 441.579 72.040 0.750 re f 26.625 418.066 0.750 24.262 re f 97.915 441.579 245.108 0.750 re f 97.915 418.066 0.750 24.262 re f 0.271 0.267 0.267 rg BT 103.165 431.724 Td /F1 9.8 Tf [(Babies should be screened for as many disorders as )] TJ ET BT 103.165 424.093 Td /F1 9.8 Tf [(possible even if it leads to false alarms. \(n = 137\))] TJ ET 0.267 0.267 0.267 rg 342.273 441.579 140.440 0.750 re f 342.273 418.066 0.750 24.262 re f 0.271 0.267 0.267 rg BT 347.523 431.724 Td /F1 9.8 Tf [(24.9)] TJ ET 0.267 0.267 0.267 rg 481.962 441.579 98.913 0.750 re f 481.962 418.066 0.750 24.262 re f 580.125 418.066 0.750 24.262 re f 0.271 0.267 0.267 rg BT 487.212 431.724 Td /F1 9.8 Tf [(44.6)] TJ ET 0.267 0.267 0.267 rg 26.625 418.066 72.040 0.750 re f 26.625 394.554 0.750 24.262 re f 97.915 418.066 245.108 0.750 re f 97.915 394.554 0.750 24.262 re f 0.271 0.267 0.267 rg BT 103.165 408.211 Td /F1 9.8 Tf [(If I had another boy, I would want him to have DMD )] TJ ET BT 103.165 400.580 Td /F1 9.8 Tf [(screening. \(n = 137\))] TJ ET 0.267 0.267 0.267 rg 342.273 418.066 140.440 0.750 re f 342.273 394.554 0.750 24.262 re f 0.271 0.267 0.267 rg BT 347.523 408.211 Td /F1 9.8 Tf [(2.2)] TJ ET 0.267 0.267 0.267 rg 481.962 418.066 98.913 0.750 re f 481.962 394.554 0.750 24.262 re f 580.125 394.554 0.750 24.262 re f 0.271 0.267 0.267 rg BT 487.212 408.211 Td /F1 9.8 Tf [(76.6)] TJ ET 0.267 0.267 0.267 rg 26.625 394.554 72.040 0.750 re f 26.625 371.041 0.750 24.262 re f 97.915 394.554 245.108 0.750 re f 97.915 371.041 0.750 24.262 re f 0.271 0.267 0.267 rg BT 103.165 384.699 Td /F1 9.8 Tf [(I would recommend DMD screening to other parens )] TJ ET BT 103.165 377.068 Td /F1 9.8 Tf [(\(n = 137\))] TJ ET 0.267 0.267 0.267 rg 342.273 394.554 140.440 0.750 re f 342.273 371.041 0.750 24.262 re f 0.271 0.267 0.267 rg BT 347.523 384.699 Td /F1 9.8 Tf [(2.9)] TJ ET 0.267 0.267 0.267 rg 481.962 394.554 98.913 0.750 re f 481.962 371.041 0.750 24.262 re f 580.125 371.041 0.750 24.262 re f 0.271 0.267 0.267 rg BT 487.212 384.699 Td /F1 9.8 Tf [(61.4)] TJ ET 0.267 0.267 0.267 rg 26.625 371.041 72.040 0.750 re f 26.625 347.529 0.750 24.262 re f 0.271 0.267 0.267 rg BT 31.875 361.186 Td /F1 9.8 Tf [(Providers)] TJ ET 0.267 0.267 0.267 rg 97.915 371.041 245.108 0.750 re f 97.915 347.529 0.750 24.262 re f 0.271 0.267 0.267 rg BT 103.165 361.186 Td /F1 9.8 Tf [(DMD screening can be easily incorporated into )] TJ ET BT 103.165 353.555 Td /F1 9.8 Tf [(routine practive \(n = 23\))] TJ ET 0.267 0.267 0.267 rg 342.273 371.041 140.440 0.750 re f 342.273 347.529 0.750 24.262 re f 0.271 0.267 0.267 rg BT 347.523 361.186 Td /F1 9.8 Tf [(0.0)] TJ ET 0.267 0.267 0.267 rg 481.962 371.041 98.913 0.750 re f 481.962 347.529 0.750 24.262 re f 580.125 347.529 0.750 24.262 re f 0.271 0.267 0.267 rg BT 487.212 361.186 Td /F1 9.8 Tf [(100)] TJ ET 0.267 0.267 0.267 rg 26.625 347.529 72.040 0.750 re f 26.625 324.016 0.750 24.262 re f 97.915 347.529 245.108 0.750 re f 97.915 324.016 0.750 24.262 re f 0.271 0.267 0.267 rg BT 103.165 337.674 Td /F1 9.8 Tf [(Collecting blood for the DMD screening test is not a )] TJ ET BT 103.165 330.043 Td /F1 9.8 Tf [(burden \(n = 21\))] TJ ET 0.267 0.267 0.267 rg 342.273 347.529 140.440 0.750 re f 342.273 324.016 0.750 24.262 re f 0.271 0.267 0.267 rg BT 347.523 337.674 Td /F1 9.8 Tf [(0.0)] TJ ET 0.267 0.267 0.267 rg 481.962 347.529 98.913 0.750 re f 481.962 324.016 0.750 24.262 re f 580.125 324.016 0.750 24.262 re f 0.271 0.267 0.267 rg BT 487.212 337.674 Td /F1 9.8 Tf [(100)] TJ ET 0.267 0.267 0.267 rg 26.625 324.016 72.040 0.750 re f 26.625 300.504 0.750 24.262 re f 97.915 324.016 245.108 0.750 re f 97.915 300.504 0.750 24.262 re f 0.271 0.267 0.267 rg BT 103.165 314.161 Td /F1 9.8 Tf [(Obtaining informed consent for DMD screening is not )] TJ ET BT 103.165 306.530 Td /F1 9.8 Tf [(a burden. \(n = 22\))] TJ ET 0.267 0.267 0.267 rg 342.273 324.016 140.440 0.750 re f 342.273 300.504 0.750 24.262 re f 0.271 0.267 0.267 rg BT 347.523 314.161 Td /F1 9.8 Tf [(4.5)] TJ ET 0.267 0.267 0.267 rg 481.962 324.016 98.913 0.750 re f 481.962 300.504 0.750 24.262 re f 580.125 300.504 0.750 24.262 re f 0.271 0.267 0.267 rg BT 487.212 314.161 Td /F1 9.8 Tf [(72.7)] TJ ET 0.267 0.267 0.267 rg 26.625 300.504 72.040 0.750 re f 26.625 276.991 0.750 24.262 re f 97.915 300.504 245.108 0.750 re f 97.915 276.991 0.750 24.262 re f 0.271 0.267 0.267 rg BT 103.165 290.649 Td /F1 9.8 Tf [(I am comfortable discussing DMD screening with my )] TJ ET BT 103.165 283.018 Td /F1 9.8 Tf [(patients. \(n = 19\))] TJ ET 0.267 0.267 0.267 rg 342.273 300.504 140.440 0.750 re f 342.273 276.991 0.750 24.262 re f 0.271 0.267 0.267 rg BT 347.523 290.649 Td /F1 9.8 Tf [(0.0)] TJ ET 0.267 0.267 0.267 rg 481.962 300.504 98.913 0.750 re f 481.962 276.991 0.750 24.262 re f 580.125 276.991 0.750 24.262 re f 0.271 0.267 0.267 rg BT 487.212 290.649 Td /F1 9.8 Tf [(63.2)] TJ ET 0.267 0.267 0.267 rg 26.625 276.991 72.040 0.750 re f 26.625 253.479 0.750 24.263 re f 97.915 276.991 245.108 0.750 re f 97.915 253.479 0.750 24.263 re f 0.271 0.267 0.267 rg BT 103.165 267.136 Td /F1 9.8 Tf [(I have the necessary information to discuss DMD )] TJ ET BT 103.165 259.505 Td /F1 9.8 Tf [(screening with my patients. \(n = 19\))] TJ ET 0.267 0.267 0.267 rg 342.273 276.991 140.440 0.750 re f 342.273 253.479 0.750 24.263 re f 0.271 0.267 0.267 rg BT 347.523 267.136 Td /F1 9.8 Tf [(5.3)] TJ ET 0.267 0.267 0.267 rg 481.962 276.991 98.913 0.750 re f 481.962 253.479 0.750 24.263 re f 580.125 253.479 0.750 24.263 re f 0.271 0.267 0.267 rg BT 487.212 267.136 Td /F1 9.8 Tf [(79.0)] TJ ET 0.267 0.267 0.267 rg 26.625 253.479 72.040 0.750 re f 26.625 237.598 0.750 16.631 re f 97.915 253.479 245.108 0.750 re f 97.915 237.598 0.750 16.631 re f 0.271 0.267 0.267 rg BT 103.165 243.624 Td /F1 9.8 Tf [(I am in favor of screening for DMD. \(n = 22\))] TJ ET 0.267 0.267 0.267 rg 342.273 253.479 140.440 0.750 re f 342.273 237.598 0.750 16.631 re f 0.271 0.267 0.267 rg BT 347.523 243.624 Td /F1 9.8 Tf [(0.0)] TJ ET 0.267 0.267 0.267 rg 481.962 253.479 98.913 0.750 re f 481.962 237.598 0.750 16.631 re f 580.125 237.598 0.750 16.631 re f 0.271 0.267 0.267 rg BT 487.212 243.624 Td /F1 9.8 Tf [(91.0)] TJ ET 0.267 0.267 0.267 rg 26.625 237.598 72.040 0.750 re f 26.625 214.085 0.750 24.262 re f 97.915 237.598 245.108 0.750 re f 97.915 214.085 0.750 24.262 re f 0.271 0.267 0.267 rg BT 103.165 227.743 Td /F1 9.8 Tf [(I am satisfied with the information provided to )] TJ ET BT 103.165 220.111 Td /F1 9.8 Tf [(educate parents about DMD screening. \(n = 20\))] TJ ET 0.267 0.267 0.267 rg 342.273 237.598 140.440 0.750 re f 342.273 214.085 0.750 24.262 re f 0.271 0.267 0.267 rg BT 347.523 227.743 Td /F1 9.8 Tf [(0.0)] TJ ET 0.267 0.267 0.267 rg 481.962 237.598 98.913 0.750 re f 481.962 214.085 0.750 24.262 re f 580.125 214.085 0.750 24.262 re f 0.271 0.267 0.267 rg BT 487.212 227.743 Td /F1 9.8 Tf [(95.0)] TJ ET 0.267 0.267 0.267 rg 26.625 214.085 72.040 0.750 re f 26.625 190.573 0.750 24.263 re f 97.915 214.085 245.108 0.750 re f 97.915 190.573 0.750 24.263 re f 0.271 0.267 0.267 rg BT 103.165 204.230 Td /F1 9.8 Tf [(The benefits of DMD screening are greater than the )] TJ ET BT 103.165 196.599 Td /F1 9.8 Tf [(risks. \(n = 22\))] TJ ET 0.267 0.267 0.267 rg 342.273 214.085 140.440 0.750 re f 342.273 190.573 0.750 24.263 re f 0.271 0.267 0.267 rg BT 347.523 204.230 Td /F1 9.8 Tf [(0.0)] TJ ET 0.267 0.267 0.267 rg 481.962 214.085 98.913 0.750 re f 481.962 190.573 0.750 24.263 re f 580.125 190.573 0.750 24.263 re f 0.271 0.267 0.267 rg BT 487.212 204.230 Td /F1 9.8 Tf [(90.9)] TJ ET 0.267 0.267 0.267 rg 26.625 190.573 71.665 0.750 re f 98.290 190.573 244.358 0.750 re f 342.648 190.573 139.690 0.750 re f 482.337 190.573 98.538 0.750 re f 26.625 167.060 0.750 24.263 re f 580.125 167.060 0.750 24.263 re f 0.271 0.267 0.267 rg BT 31.875 180.718 Td /F1 9.8 Tf [(*% Disagreement reflects the percentage of respondents who indicated that they disagreed or strongly disagreed with the )] TJ ET BT 31.875 173.086 Td /F1 9.8 Tf [(statement.)] TJ ET 0.267 0.267 0.267 rg 26.625 167.060 71.665 0.750 re f 26.625 151.179 71.665 0.750 re f 98.290 167.060 244.358 0.750 re f 98.290 151.179 244.358 0.750 re f 342.648 167.060 139.690 0.750 re f 342.648 151.179 139.690 0.750 re f 482.337 167.060 98.538 0.750 re f 482.337 151.179 98.538 0.750 re f 26.625 151.179 0.750 16.631 re f 580.125 151.179 0.750 16.631 re f 0.271 0.267 0.267 rg BT 31.875 157.205 Td /F1 9.8 Tf [(% Agreement reflects the percentage of respondents who indicated that they agreed or strongly agreed with the statement.)] TJ ET BT 26.250 96.280 Td /F1 9.8 Tf [(The majority of parents responding to the questionnaire were supportive of DMD screening \()] TJ ET BT 423.455 96.280 Td /F4 9.8 Tf [(Table 4)] TJ ET BT 457.054 96.280 Td /F1 9.8 Tf [(\). Parents were interested )] TJ ET BT 26.250 84.375 Td /F1 9.8 Tf [(in the option of DMD screening, particularly when performed along with routine testing. Written comments of parents indicated )] TJ ET BT 26.250 72.471 Td /F1 9.8 Tf [(that they liked the convenience of including DMD screening with other tests, particularly as no additional needle stick was )] TJ ET BT 26.250 60.566 Td /F1 9.8 Tf [(needed. Most parents thought screening should be optional, but they were evenly divided on the timing of screening, with half )] TJ ET BT 26.250 48.661 Td /F1 9.8 Tf [(preferring it to be part of newborn screening and the other half preferring it to be done with other tests later in infancy. Although )] TJ ET BT 26.250 36.756 Td /F1 9.8 Tf [(a majority of parents thought that identifying infants through screening was important, one-third did not think that screening for )] TJ ET Q q 15.000 22.471 577.500 754.529 re W n 0.271 0.267 0.267 rg BT 26.250 767.476 Td /F1 9.8 Tf [(A large majority of respondents whose sons were screened reported a positive experience, with almost 90% of parents )] TJ ET BT 26.250 755.571 Td /F1 9.8 Tf [(indicating that screening for DMD was worthwhile \()] TJ ET BT 245.147 755.571 Td /F4 9.8 Tf [(Table 4)] TJ ET BT 278.746 755.571 Td /F1 9.8 Tf [(\). Another indication of a positive experience was that the majority of )] TJ ET BT 26.250 743.667 Td /F1 9.8 Tf [(parents also reported that they would screen future sons and recommend screening to other parents.)] TJ ET BT 26.250 724.262 Td /F1 9.8 Tf [(Approximately 95% of parents reported that the screening experience was not stressful \()] TJ ET BT 407.212 724.262 Td /F4 9.8 Tf [(Table 4)] TJ ET BT 440.810 724.262 Td /F1 9.8 Tf [(\). The low stress experienced )] TJ ET BT 26.250 712.357 Td /F1 9.8 Tf [(by parents came as little surprise, as none of the parents received a positive screening result.)] TJ ET q 26.250 688.740 555.000 13.736 re W n 0.271 0.267 0.267 rg BT 26.250 691.487 Td /F1 9.8 Tf [(Table 4. Parent, participant, and provider experiences and opinions of Duchenne muscular dystrophy screening)] TJ ET Q 1.000 1.000 1.000 rg 26.250 150.804 555.000 530.436 re f 0.965 0.965 0.965 rg 27.000 668.210 71.290 12.280 re f 0.267 0.267 0.267 rg 26.625 680.115 71.665 0.750 re f 26.625 667.835 0.750 13.030 re f 0.271 0.267 0.267 rg BT 31.500 670.966 Td /F4 9.8 Tf [(Group)] TJ ET 0.965 0.965 0.965 rg 98.290 668.210 244.358 12.280 re f 0.267 0.267 0.267 rg 98.290 680.115 244.358 0.750 re f 0.271 0.267 0.267 rg BT 102.790 670.966 Td /F4 9.8 Tf [(Question)] TJ ET 0.965 0.965 0.965 rg 342.648 668.210 139.690 12.280 re f 0.267 0.267 0.267 rg 342.648 680.115 139.690 0.750 re f 0.271 0.267 0.267 rg BT 347.148 670.966 Td /F4 9.8 Tf [(Answer)] TJ ET 0.965 0.965 0.965 rg 482.337 668.210 98.163 12.280 re f 0.267 0.267 0.267 rg 482.337 680.115 98.538 0.750 re f 580.125 667.835 0.750 13.030 re f 0.271 0.267 0.267 rg BT 486.837 670.966 Td /F4 9.8 Tf [(%)] TJ ET 0.267 0.267 0.267 rg 26.625 667.835 72.040 0.750 re f 26.625 636.691 0.750 31.894 re f 0.271 0.267 0.267 rg BT 31.875 657.980 Td /F1 9.8 Tf [(Parents)] TJ ET 0.267 0.267 0.267 rg 97.915 667.835 245.108 0.750 re f 97.915 636.691 0.750 31.894 re f 0.271 0.267 0.267 rg BT 103.165 657.980 Td /F1 9.8 Tf [(Do you think boys should be screened for DMD? \(n = )] TJ ET BT 103.165 650.349 Td /F1 9.8 Tf [(138\))] TJ ET 0.267 0.267 0.267 rg 342.273 667.835 140.440 0.750 re f 342.273 636.691 0.750 31.894 re f 0.271 0.267 0.267 rg BT 347.523 657.980 Td /F1 9.8 Tf [(Yes)] TJ ET BT 347.523 650.349 Td /F1 9.8 Tf [(No)] TJ ET BT 347.523 642.718 Td /F1 9.8 Tf [(Dont Know)] TJ ET 0.267 0.267 0.267 rg 481.962 667.835 98.913 0.750 re f 481.962 636.691 0.750 31.894 re f 580.125 636.691 0.750 31.894 re f 0.271 0.267 0.267 rg BT 487.212 657.980 Td /F1 9.8 Tf [(65.2)] TJ ET BT 487.212 650.349 Td /F1 9.8 Tf [(0.0)] TJ ET BT 487.212 642.718 Td /F1 9.8 Tf [(34.8)] TJ ET 0.267 0.267 0.267 rg 26.625 636.691 72.040 0.750 re f 26.625 590.285 0.750 47.156 re f 97.915 636.691 245.108 0.750 re f 97.915 590.285 0.750 47.156 re f 0.271 0.267 0.267 rg BT 103.165 626.836 Td /F1 9.8 Tf [(If yes, when should they be screened? \(n = 89\))] TJ ET 0.267 0.267 0.267 rg 342.273 636.691 140.440 0.750 re f 342.273 590.285 0.750 47.156 re f 0.271 0.267 0.267 rg BT 347.523 626.836 Td /F1 9.8 Tf [(Right after birth)] TJ ET BT 347.523 619.205 Td /F1 9.8 Tf [(Between 6 and 15 months of )] TJ ET BT 347.523 611.574 Td /F1 9.8 Tf [(age)] TJ ET BT 347.523 603.943 Td /F1 9.8 Tf [(When symptoms start)] TJ ET BT 347.523 596.311 Td /F1 9.8 Tf [(Other)] TJ ET 0.267 0.267 0.267 rg 481.962 636.691 98.913 0.750 re f 481.962 590.285 0.750 47.156 re f 580.125 590.285 0.750 47.156 re f 0.271 0.267 0.267 rg BT 487.212 626.836 Td /F1 9.8 Tf [(49.4)] TJ ET BT 487.212 619.205 Td /F1 9.8 Tf [(46.1 )] TJ ET BT 487.212 611.574 Td /F1 9.8 Tf [(0.0)] TJ ET BT 487.212 603.943 Td /F1 9.8 Tf [(4.5)] TJ ET 0.267 0.267 0.267 rg 26.625 590.285 72.040 0.750 re f 26.625 559.141 0.750 31.894 re f 97.915 590.285 245.108 0.750 re f 97.915 559.141 0.750 31.894 re f 0.271 0.267 0.267 rg BT 103.165 580.430 Td /F1 9.8 Tf [(Should screening be required or optional? \(n = 138\))] TJ ET 0.267 0.267 0.267 rg 342.273 590.285 140.440 0.750 re f 342.273 559.141 0.750 31.894 re f 0.271 0.267 0.267 rg BT 347.523 580.430 Td /F1 9.8 Tf [(Required)] TJ ET BT 347.523 572.799 Td /F1 9.8 Tf [(Optional)] TJ ET BT 347.523 565.168 Td /F1 9.8 Tf [(No Opinion)] TJ ET 0.267 0.267 0.267 rg 481.962 590.285 98.913 0.750 re f 481.962 559.141 0.750 31.894 re f 580.125 559.141 0.750 31.894 re f 0.271 0.267 0.267 rg BT 487.212 580.430 Td /F1 9.8 Tf [(12.3)] TJ ET BT 487.212 572.799 Td /F1 9.8 Tf [(78.3)] TJ ET BT 487.212 565.168 Td /F1 9.8 Tf [(9.4)] TJ ET 0.267 0.267 0.267 rg 26.625 559.141 72.040 0.750 re f 26.625 527.998 0.750 31.894 re f 97.915 559.141 245.108 0.750 re f 97.915 527.998 0.750 31.894 re f 0.271 0.267 0.267 rg BT 103.165 549.286 Td /F1 9.8 Tf [(What describes your overall experience with DMD )] TJ ET BT 103.165 541.655 Td /F1 9.8 Tf [(screening? \(n = 137\))] TJ ET 0.267 0.267 0.267 rg 342.273 559.141 140.440 0.750 re f 342.273 527.998 0.750 31.894 re f 0.271 0.267 0.267 rg BT 347.523 549.286 Td /F1 9.8 Tf [(Very/Somewhat satified)] TJ ET BT 347.523 541.655 Td /F1 9.8 Tf [(Neutral)] TJ ET BT 347.523 534.024 Td /F1 9.8 Tf [(Very/Somewhat dissatisfied)] TJ ET 0.267 0.267 0.267 rg 481.962 559.141 98.913 0.750 re f 481.962 527.998 0.750 31.894 re f 580.125 527.998 0.750 31.894 re f 0.271 0.267 0.267 rg BT 487.212 549.286 Td /F1 9.8 Tf [(73.7)] TJ ET BT 487.212 541.655 Td /F1 9.8 Tf [(16.1)] TJ ET BT 487.212 534.024 Td /F1 9.8 Tf [(9.5)] TJ ET 0.267 0.267 0.267 rg 26.625 527.998 72.040 0.750 re f 26.625 496.854 0.750 31.894 re f 97.915 527.998 245.108 0.750 re f 97.915 496.854 0.750 31.894 re f 0.271 0.267 0.267 rg BT 103.165 518.143 Td /F1 9.8 Tf [(How stressful did you find your experience with DMD )] TJ ET BT 103.165 510.511 Td /F1 9.8 Tf [(screening \(n = 138\))] TJ ET 0.267 0.267 0.267 rg 342.273 527.998 140.440 0.750 re f 342.273 496.854 0.750 31.894 re f 0.271 0.267 0.267 rg BT 347.523 518.143 Td /F1 9.8 Tf [(Not at all/A little stressful)] TJ ET BT 347.523 510.511 Td /F1 9.8 Tf [(Somewhat stressful)] TJ ET BT 347.523 502.880 Td /F1 9.8 Tf [(Extremely/Very stressful)] TJ ET 0.267 0.267 0.267 rg 481.962 527.998 98.913 0.750 re f 481.962 496.854 0.750 31.894 re f 580.125 496.854 0.750 31.894 re f 0.271 0.267 0.267 rg BT 487.212 518.143 Td /F1 9.8 Tf [(95.6)] TJ ET BT 487.212 510.511 Td /F1 9.8 Tf [(4.3)] TJ ET BT 487.212 502.880 Td /F1 9.8 Tf [(0.0)] TJ ET 0.267 0.267 0.267 rg 26.625 496.854 72.040 0.750 re f 26.625 480.973 0.750 16.631 re f 0.271 0.267 0.267 rg BT 31.875 486.999 Td /F4 9.8 Tf [(Group)] TJ ET 0.267 0.267 0.267 rg 97.915 496.854 245.108 0.750 re f 97.915 480.973 0.750 16.631 re f 0.271 0.267 0.267 rg BT 103.165 486.999 Td /F4 9.8 Tf [(Statement)] TJ ET 0.267 0.267 0.267 rg 342.273 496.854 140.440 0.750 re f 342.273 480.973 0.750 16.631 re f 0.271 0.267 0.267 rg BT 347.523 486.999 Td /F4 9.8 Tf [(% Disagreement*)] TJ ET 0.267 0.267 0.267 rg 481.962 496.854 98.913 0.750 re f 481.962 480.973 0.750 16.631 re f 580.125 480.973 0.750 16.631 re f 0.271 0.267 0.267 rg BT 487.212 486.999 Td /F4 9.8 Tf [(% Agreement)] TJ ET 0.267 0.267 0.267 rg 26.625 480.973 72.040 0.750 re f 26.625 465.091 0.750 16.631 re f 0.271 0.267 0.267 rg BT 31.875 471.118 Td /F1 9.8 Tf [(Parents)] TJ ET 0.267 0.267 0.267 rg 97.915 480.973 245.108 0.750 re f 97.915 465.091 0.750 16.631 re f 0.271 0.267 0.267 rg BT 103.165 471.118 Td /F1 9.8 Tf [(DMD screening was worthwhile. \(n = 138\))] TJ ET 0.267 0.267 0.267 rg 342.273 480.973 140.440 0.750 re f 342.273 465.091 0.750 16.631 re f 0.271 0.267 0.267 rg BT 347.523 471.118 Td /F1 9.8 Tf [(0.0)] TJ ET 0.267 0.267 0.267 rg 481.962 480.973 98.913 0.750 re f 481.962 465.091 0.750 16.631 re f 580.125 465.091 0.750 16.631 re f 0.271 0.267 0.267 rg BT 487.212 471.118 Td /F1 9.8 Tf [(87.0)] TJ ET 0.267 0.267 0.267 rg 26.625 465.091 72.040 0.750 re f 26.625 441.579 0.750 24.262 re f 97.915 465.091 245.108 0.750 re f 97.915 441.579 0.750 24.262 re f 0.271 0.267 0.267 rg BT 103.165 455.236 Td /F1 9.8 Tf [(It is important for baby boys to be screened for DMD. )] TJ ET BT 103.165 447.605 Td /F1 9.8 Tf [(\(n = 135\))] TJ ET 0.267 0.267 0.267 rg 342.273 465.091 140.440 0.750 re f 342.273 441.579 0.750 24.262 re f 0.271 0.267 0.267 rg BT 347.523 455.236 Td /F1 9.8 Tf [(0.0)] TJ ET 0.267 0.267 0.267 rg 481.962 465.091 98.913 0.750 re f 481.962 441.579 0.750 24.262 re f 580.125 441.579 0.750 24.262 re f 0.271 0.267 0.267 rg BT 487.212 455.236 Td /F1 9.8 Tf [(66.7)] TJ ET 0.267 0.267 0.267 rg 26.625 441.579 72.040 0.750 re f 26.625 418.066 0.750 24.262 re f 97.915 441.579 245.108 0.750 re f 97.915 418.066 0.750 24.262 re f 0.271 0.267 0.267 rg BT 103.165 431.724 Td /F1 9.8 Tf [(Babies should be screened for as many disorders as )] TJ ET BT 103.165 424.093 Td /F1 9.8 Tf [(possible even if it leads to false alarms. \(n = 137\))] TJ ET 0.267 0.267 0.267 rg 342.273 441.579 140.440 0.750 re f 342.273 418.066 0.750 24.262 re f 0.271 0.267 0.267 rg BT 347.523 431.724 Td /F1 9.8 Tf [(24.9)] TJ ET 0.267 0.267 0.267 rg 481.962 441.579 98.913 0.750 re f 481.962 418.066 0.750 24.262 re f 580.125 418.066 0.750 24.262 re f 0.271 0.267 0.267 rg BT 487.212 431.724 Td /F1 9.8 Tf [(44.6)] TJ ET 0.267 0.267 0.267 rg 26.625 418.066 72.040 0.750 re f 26.625 394.554 0.750 24.262 re f 97.915 418.066 245.108 0.750 re f 97.915 394.554 0.750 24.262 re f 0.271 0.267 0.267 rg BT 103.165 408.211 Td /F1 9.8 Tf [(If I had another boy, I would want him to have DMD )] TJ ET BT 103.165 400.580 Td /F1 9.8 Tf [(screening. \(n = 137\))] TJ ET 0.267 0.267 0.267 rg 342.273 418.066 140.440 0.750 re f 342.273 394.554 0.750 24.262 re f 0.271 0.267 0.267 rg BT 347.523 408.211 Td /F1 9.8 Tf [(2.2)] TJ ET 0.267 0.267 0.267 rg 481.962 418.066 98.913 0.750 re f 481.962 394.554 0.750 24.262 re f 580.125 394.554 0.750 24.262 re f 0.271 0.267 0.267 rg BT 487.212 408.211 Td /F1 9.8 Tf [(76.6)] TJ ET 0.267 0.267 0.267 rg 26.625 394.554 72.040 0.750 re f 26.625 371.041 0.750 24.262 re f 97.915 394.554 245.108 0.750 re f 97.915 371.041 0.750 24.262 re f 0.271 0.267 0.267 rg BT 103.165 384.699 Td /F1 9.8 Tf [(I would recommend DMD screening to other parens )] TJ ET BT 103.165 377.068 Td /F1 9.8 Tf [(\(n = 137\))] TJ ET 0.267 0.267 0.267 rg 342.273 394.554 140.440 0.750 re f 342.273 371.041 0.750 24.262 re f 0.271 0.267 0.267 rg BT 347.523 384.699 Td /F1 9.8 Tf [(2.9)] TJ ET 0.267 0.267 0.267 rg 481.962 394.554 98.913 0.750 re f 481.962 371.041 0.750 24.262 re f 580.125 371.041 0.750 24.262 re f 0.271 0.267 0.267 rg BT 487.212 384.699 Td /F1 9.8 Tf [(61.4)] TJ ET 0.267 0.267 0.267 rg 26.625 371.041 72.040 0.750 re f 26.625 347.529 0.750 24.262 re f 0.271 0.267 0.267 rg BT 31.875 361.186 Td /F1 9.8 Tf [(Providers)] TJ ET 0.267 0.267 0.267 rg 97.915 371.041 245.108 0.750 re f 97.915 347.529 0.750 24.262 re f 0.271 0.267 0.267 rg BT 103.165 361.186 Td /F1 9.8 Tf [(DMD screening can be easily incorporated into )] TJ ET BT 103.165 353.555 Td /F1 9.8 Tf [(routine practive \(n = 23\))] TJ ET 0.267 0.267 0.267 rg 342.273 371.041 140.440 0.750 re f 342.273 347.529 0.750 24.262 re f 0.271 0.267 0.267 rg BT 347.523 361.186 Td /F1 9.8 Tf [(0.0)] TJ ET 0.267 0.267 0.267 rg 481.962 371.041 98.913 0.750 re f 481.962 347.529 0.750 24.262 re f 580.125 347.529 0.750 24.262 re f 0.271 0.267 0.267 rg BT 487.212 361.186 Td /F1 9.8 Tf [(100)] TJ ET 0.267 0.267 0.267 rg 26.625 347.529 72.040 0.750 re f 26.625 324.016 0.750 24.262 re f 97.915 347.529 245.108 0.750 re f 97.915 324.016 0.750 24.262 re f 0.271 0.267 0.267 rg BT 103.165 337.674 Td /F1 9.8 Tf [(Collecting blood for the DMD screening test is not a )] TJ ET BT 103.165 330.043 Td /F1 9.8 Tf [(burden \(n = 21\))] TJ ET 0.267 0.267 0.267 rg 342.273 347.529 140.440 0.750 re f 342.273 324.016 0.750 24.262 re f 0.271 0.267 0.267 rg BT 347.523 337.674 Td /F1 9.8 Tf [(0.0)] TJ ET 0.267 0.267 0.267 rg 481.962 347.529 98.913 0.750 re f 481.962 324.016 0.750 24.262 re f 580.125 324.016 0.750 24.262 re f 0.271 0.267 0.267 rg BT 487.212 337.674 Td /F1 9.8 Tf [(100)] TJ ET 0.267 0.267 0.267 rg 26.625 324.016 72.040 0.750 re f 26.625 300.504 0.750 24.262 re f 97.915 324.016 245.108 0.750 re f 97.915 300.504 0.750 24.262 re f 0.271 0.267 0.267 rg BT 103.165 314.161 Td /F1 9.8 Tf [(Obtaining informed consent for DMD screening is not )] TJ ET BT 103.165 306.530 Td /F1 9.8 Tf [(a burden. \(n = 22\))] TJ ET 0.267 0.267 0.267 rg 342.273 324.016 140.440 0.750 re f 342.273 300.504 0.750 24.262 re f 0.271 0.267 0.267 rg BT 347.523 314.161 Td /F1 9.8 Tf [(4.5)] TJ ET 0.267 0.267 0.267 rg 481.962 324.016 98.913 0.750 re f 481.962 300.504 0.750 24.262 re f 580.125 300.504 0.750 24.262 re f 0.271 0.267 0.267 rg BT 487.212 314.161 Td /F1 9.8 Tf [(72.7)] TJ ET 0.267 0.267 0.267 rg 26.625 300.504 72.040 0.750 re f 26.625 276.991 0.750 24.262 re f 97.915 300.504 245.108 0.750 re f 97.915 276.991 0.750 24.262 re f 0.271 0.267 0.267 rg BT 103.165 290.649 Td /F1 9.8 Tf [(I am comfortable discussing DMD screening with my )] TJ ET BT 103.165 283.018 Td /F1 9.8 Tf [(patients. \(n = 19\))] TJ ET 0.267 0.267 0.267 rg 342.273 300.504 140.440 0.750 re f 342.273 276.991 0.750 24.262 re f 0.271 0.267 0.267 rg BT 347.523 290.649 Td /F1 9.8 Tf [(0.0)] TJ ET 0.267 0.267 0.267 rg 481.962 300.504 98.913 0.750 re f 481.962 276.991 0.750 24.262 re f 580.125 276.991 0.750 24.262 re f 0.271 0.267 0.267 rg BT 487.212 290.649 Td /F1 9.8 Tf [(63.2)] TJ ET 0.267 0.267 0.267 rg 26.625 276.991 72.040 0.750 re f 26.625 253.479 0.750 24.263 re f 97.915 276.991 245.108 0.750 re f 97.915 253.479 0.750 24.263 re f 0.271 0.267 0.267 rg BT 103.165 267.136 Td /F1 9.8 Tf [(I have the necessary information to discuss DMD )] TJ ET BT 103.165 259.505 Td /F1 9.8 Tf [(screening with my patients. \(n = 19\))] TJ ET 0.267 0.267 0.267 rg 342.273 276.991 140.440 0.750 re f 342.273 253.479 0.750 24.263 re f 0.271 0.267 0.267 rg BT 347.523 267.136 Td /F1 9.8 Tf [(5.3)] TJ ET 0.267 0.267 0.267 rg 481.962 276.991 98.913 0.750 re f 481.962 253.479 0.750 24.263 re f 580.125 253.479 0.750 24.263 re f 0.271 0.267 0.267 rg BT 487.212 267.136 Td /F1 9.8 Tf [(79.0)] TJ ET 0.267 0.267 0.267 rg 26.625 253.479 72.040 0.750 re f 26.625 237.598 0.750 16.631 re f 97.915 253.479 245.108 0.750 re f 97.915 237.598 0.750 16.631 re f 0.271 0.267 0.267 rg BT 103.165 243.624 Td /F1 9.8 Tf [(I am in favor of screening for DMD. \(n = 22\))] TJ ET 0.267 0.267 0.267 rg 342.273 253.479 140.440 0.750 re f 342.273 237.598 0.750 16.631 re f 0.271 0.267 0.267 rg BT 347.523 243.624 Td /F1 9.8 Tf [(0.0)] TJ ET 0.267 0.267 0.267 rg 481.962 253.479 98.913 0.750 re f 481.962 237.598 0.750 16.631 re f 580.125 237.598 0.750 16.631 re f 0.271 0.267 0.267 rg BT 487.212 243.624 Td /F1 9.8 Tf [(91.0)] TJ ET 0.267 0.267 0.267 rg 26.625 237.598 72.040 0.750 re f 26.625 214.085 0.750 24.262 re f 97.915 237.598 245.108 0.750 re f 97.915 214.085 0.750 24.262 re f 0.271 0.267 0.267 rg BT 103.165 227.743 Td /F1 9.8 Tf [(I am satisfied with the information provided to )] TJ ET BT 103.165 220.111 Td /F1 9.8 Tf [(educate parents about DMD screening. \(n = 20\))] TJ ET 0.267 0.267 0.267 rg 342.273 237.598 140.440 0.750 re f 342.273 214.085 0.750 24.262 re f 0.271 0.267 0.267 rg BT 347.523 227.743 Td /F1 9.8 Tf [(0.0)] TJ ET 0.267 0.267 0.267 rg 481.962 237.598 98.913 0.750 re f 481.962 214.085 0.750 24.262 re f 580.125 214.085 0.750 24.262 re f 0.271 0.267 0.267 rg BT 487.212 227.743 Td /F1 9.8 Tf [(95.0)] TJ ET 0.267 0.267 0.267 rg 26.625 214.085 72.040 0.750 re f 26.625 190.573 0.750 24.263 re f 97.915 214.085 245.108 0.750 re f 97.915 190.573 0.750 24.263 re f 0.271 0.267 0.267 rg BT 103.165 204.230 Td /F1 9.8 Tf [(The benefits of DMD screening are greater than the )] TJ ET BT 103.165 196.599 Td /F1 9.8 Tf [(risks. \(n = 22\))] TJ ET 0.267 0.267 0.267 rg 342.273 214.085 140.440 0.750 re f 342.273 190.573 0.750 24.263 re f 0.271 0.267 0.267 rg BT 347.523 204.230 Td /F1 9.8 Tf [(0.0)] TJ ET 0.267 0.267 0.267 rg 481.962 214.085 98.913 0.750 re f 481.962 190.573 0.750 24.263 re f 580.125 190.573 0.750 24.263 re f 0.271 0.267 0.267 rg BT 487.212 204.230 Td /F1 9.8 Tf [(90.9)] TJ ET 0.267 0.267 0.267 rg 26.625 190.573 71.665 0.750 re f 98.290 190.573 244.358 0.750 re f 342.648 190.573 139.690 0.750 re f 482.337 190.573 98.538 0.750 re f 26.625 167.060 0.750 24.263 re f 580.125 167.060 0.750 24.263 re f 0.271 0.267 0.267 rg BT 31.875 180.718 Td /F1 9.8 Tf [(*% Disagreement reflects the percentage of respondents who indicated that they disagreed or strongly disagreed with the )] TJ ET BT 31.875 173.086 Td /F1 9.8 Tf [(statement.)] TJ ET 0.267 0.267 0.267 rg 26.625 167.060 71.665 0.750 re f 26.625 151.179 71.665 0.750 re f 98.290 167.060 244.358 0.750 re f 98.290 151.179 244.358 0.750 re f 342.648 167.060 139.690 0.750 re f 342.648 151.179 139.690 0.750 re f 482.337 167.060 98.538 0.750 re f 482.337 151.179 98.538 0.750 re f 26.625 151.179 0.750 16.631 re f 580.125 151.179 0.750 16.631 re f 0.271 0.267 0.267 rg BT 31.875 157.205 Td /F1 9.8 Tf [(% Agreement reflects the percentage of respondents who indicated that they agreed or strongly agreed with the statement.)] TJ ET BT 26.250 96.280 Td /F1 9.8 Tf [(The majority of parents responding to the questionnaire were supportive of DMD screening \()] TJ ET BT 423.455 96.280 Td /F4 9.8 Tf [(Table 4)] TJ ET BT 457.054 96.280 Td /F1 9.8 Tf [(\). Parents were interested )] TJ ET BT 26.250 84.375 Td /F1 9.8 Tf [(in the option of DMD screening, particularly when performed along with routine testing. Written comments of parents indicated )] TJ ET BT 26.250 72.471 Td /F1 9.8 Tf [(that they liked the convenience of including DMD screening with other tests, particularly as no additional needle stick was )] TJ ET BT 26.250 60.566 Td /F1 9.8 Tf [(needed. Most parents thought screening should be optional, but they were evenly divided on the timing of screening, with half )] TJ ET BT 26.250 48.661 Td /F1 9.8 Tf [(preferring it to be part of newborn screening and the other half preferring it to be done with other tests later in infancy. Although )] TJ ET BT 26.250 36.756 Td /F1 9.8 Tf [(a majority of parents thought that identifying infants through screening was important, one-third did not think that screening for )] TJ ET Q q 0.000 0.000 0.000 rg BT 291.710 19.825 Td /F1 11.0 Tf [(6)] TJ ET BT 25.000 19.825 Td /F1 11.0 Tf [(PLOS Currents Muscular Dystrophy)] TJ ET Q endstream endobj 313 0 obj << /Type /Page /Parent 3 0 R /Annots [ 315 0 R 317 0 R 319 0 R 321 0 R 323 0 R 325 0 R 327 0 R 329 0 R 331 0 R 333 0 R 335 0 R 337 0 R 339 0 R 341 0 R 343 0 R 345 0 R 347 0 R 349 0 R 351 0 R 353 0 R 355 0 R 357 0 R 359 0 R 361 0 R 363 0 R 365 0 R 367 0 R 369 0 R 371 0 R 373 0 R 375 0 R 377 0 R 379 0 R ] /Contents 314 0 R >> endobj 314 0 obj << /Length 30979 >> stream 0.271 0.267 0.267 rg q 15.000 32.587 577.500 744.413 re W n 0.271 0.267 0.267 rg BT 26.250 767.476 Td /F1 9.8 Tf [(more conditions was indicated if it also increased the number of parents receiving false-positive results.)] TJ ET BT 26.250 748.071 Td /F5 9.8 Tf [(Provider Demographics and Opinions)] TJ ET BT 26.250 728.667 Td /F1 9.8 Tf [(A questionnaire was given to providers to evaluate their opinions about the DMD screening program. A total of 25 providers )] TJ ET BT 26.250 716.762 Td /F1 9.8 Tf [(from three of the four clinics returned surveys. Most of those completing the provider questionnaire were female and White \()] TJ ET BT 26.250 704.857 Td /F4 9.8 Tf [(Table 1)] TJ ET BT 59.849 704.857 Td /F1 9.8 Tf [(\). The majority of providers were nurses or physicians. Nurse practitioners, physician assistants, medical assistants, and )] TJ ET BT 26.250 692.952 Td /F1 9.8 Tf [(laboratory technicians accounted for the rest of providers. All providers specialized in pediatrics and were in private practice in )] TJ ET BT 26.250 681.048 Td /F1 9.8 Tf [(the metropolitan Atlanta area.)] TJ ET BT 26.250 661.643 Td /F1 9.8 Tf [(Information gathered through the provider questionnaire indicated that the majority of these providers were supportive of DMD )] TJ ET BT 26.250 649.738 Td /F1 9.8 Tf [(screening \()] TJ ET BT 74.474 649.738 Td /F4 9.8 Tf [(Table 4)] TJ ET BT 108.072 649.738 Td /F1 9.8 Tf [(\). Providers thought DMD screening could be incorporated easily into practice and that collecting blood, a )] TJ ET BT 26.250 637.833 Td /F1 9.8 Tf [(role that the office staff routinely performed, was not a burden. The majority of providers also thought it was not a burden )] TJ ET BT 26.250 625.929 Td /F1 9.8 Tf [(obtaining consent; however, as they were not involved in gaining parental consent, this could not be verified through practice.)] TJ ET BT 26.250 589.326 Td /F4 12.0 Tf [(Discussion)] TJ ET BT 26.250 569.372 Td /F1 9.8 Tf [(This is the first study in the United States to conduct DMD screening after the newborn period through pediatric care providers. )] TJ ET BT 26.250 557.467 Td /F1 9.8 Tf [(In Germany, where screening occurred through pediatric providers, parents were given information in the birthing hospitals and )] TJ ET BT 26.250 545.562 Td /F1 9.8 Tf [(at pediatricians offices)] TJ ET 0.267 0.267 0.267 rg BT 124.871 547.070 Td /F4 8.7 Tf [(8)] TJ ET BT 129.690 547.070 Td /F4 8.7 Tf [(9)] TJ ET 0.271 0.267 0.267 rg BT 134.509 545.562 Td /F1 9.8 Tf [(. Parents were then able to request screening during one of the well-baby visits from 4 weeks to 1 year )] TJ ET BT 26.250 533.658 Td /F1 9.8 Tf [(of age. Scheuerbrandt et al reported that 14.4% of infant boys born in West Germany in 1983 were screened for DMD, with 65% )] TJ ET BT 26.250 521.753 Td /F1 9.8 Tf [(of screening occurring at the first well-baby check at 4-6 weeks. At that time, they estimated that half the birthing hospitals in )] TJ ET BT 26.250 509.848 Td /F1 9.8 Tf [(West Germany were providing information on screening.)] TJ ET BT 26.250 490.443 Td /F1 9.8 Tf [(Data from our study and from Germany demonstrate the benefits and limitations of infant screening in comparison with newborn )] TJ ET BT 26.250 478.539 Td /F1 9.8 Tf [(screening for DMD. Screening after the newborn period enables some of the ethical issues surrounding newborn screening for )] TJ ET BT 26.250 466.634 Td /F1 9.8 Tf [(DMD to be addressed. Parents could have more time to consider screening in a less hectic environment; our study showed that )] TJ ET BT 26.250 454.729 Td /F1 9.8 Tf [(most parents who chose screening had enough time and were able to understand the risks and benefits of DMD screening. )] TJ ET BT 26.250 442.824 Td /F1 9.8 Tf [(Later time points for screening also provide additional time for parentchild bonding to occur and clearly delineate between )] TJ ET BT 26.250 430.920 Td /F1 9.8 Tf [(optional and mandatory screening. Because CK levels have been shown to be higher in the newborn period)] TJ ET 0.267 0.267 0.267 rg BT 490.155 432.427 Td /F4 8.7 Tf [(31)] TJ ET 0.271 0.267 0.267 rg BT 499.792 430.920 Td /F1 9.8 Tf [(, screening later )] TJ ET BT 26.250 419.015 Td /F1 9.8 Tf [(in infancy when CK levels have normalized can decrease the rate of false positives; in our study, we did not detect any false )] TJ ET BT 26.250 407.110 Td /F1 9.8 Tf [(positives while Scheuerbrandt et al had a low rate of 0.016%)] TJ ET 0.267 0.267 0.267 rg BT 287.462 408.617 Td /F4 8.7 Tf [(8)] TJ ET 0.271 0.267 0.267 rg BT 292.281 407.110 Td /F1 9.8 Tf [(. However, infant screening has several drawbacks when )] TJ ET BT 26.250 395.205 Td /F1 9.8 Tf [(compared with newborn screening for DMD. While infant screening can occur at routine well-baby visits, established systems )] TJ ET BT 26.250 383.301 Td /F1 9.8 Tf [(and policies are not in place for infant screening to be offered universally. Also, the later timing of infant screening means that )] TJ ET BT 26.250 371.396 Td /F1 9.8 Tf [(some parents will not learn about their reproductive risks before having another child. Lastly, parents themselves might prefer )] TJ ET BT 26.250 359.491 Td /F1 9.8 Tf [(screening to occur earlier; in our pilot study, half of the parents who participated preferred newborn screening to screening at a )] TJ ET BT 26.250 347.586 Td /F1 9.8 Tf [(later age. Further analysis of parent preferences and experiences is planned through a direct comparison of questionnaire data )] TJ ET BT 26.250 335.682 Td /F1 9.8 Tf [(from the CDC-funded newborn and infant screening studies.)] TJ ET BT 26.250 316.277 Td /F1 9.8 Tf [(The consideration of DMD newborn or later infant screening represents a recent shift in thinking about benefits not only to the )] TJ ET BT 26.250 304.372 Td /F1 9.8 Tf [(affected child, but also to the family and society)] TJ ET 0.267 0.267 0.267 rg BT 230.561 305.879 Td /F4 8.7 Tf [(32)] TJ ET BT 240.199 305.879 Td /F4 8.7 Tf [(33)] TJ ET 0.271 0.267 0.267 rg BT 249.836 304.372 Td /F1 9.8 Tf [(. Traditionally, benefits have focused on early medical interventions that )] TJ ET BT 26.250 292.467 Td /F1 9.8 Tf [(improve the health outcome of affected children)] TJ ET 0.267 0.267 0.267 rg BT 231.643 293.975 Td /F4 8.7 Tf [(17)] TJ ET 0.271 0.267 0.267 rg BT 241.281 292.467 Td /F1 9.8 Tf [(. However, in 2005, along with proposing updated criteria and a set of 29 core )] TJ ET BT 26.250 280.563 Td /F1 9.8 Tf [(conditions for newborn screening, the American College of Medical Genetics recommended that benefits to the family, )] TJ ET BT 26.250 268.658 Td /F1 9.8 Tf [(providers, and public also should be considered after the best interest of the child)] TJ ET 0.267 0.267 0.267 rg BT 376.343 270.165 Td /F4 8.7 Tf [(34)] TJ ET 0.271 0.267 0.267 rg BT 385.981 268.658 Td /F1 9.8 Tf [(. Recently, the Secretarys Advisory )] TJ ET BT 26.250 256.753 Td /F1 9.8 Tf [(Committee on Heritable Disorders in Newborns and Children, the committee that reviews and recommends conditions for )] TJ ET BT 26.250 244.848 Td /F1 9.8 Tf [(inclusion on newborn screening panels, published evaluation criteria that also consider benefits beyond those of the child)] TJ ET 0.267 0.267 0.267 rg BT 547.592 246.356 Td /F4 8.7 Tf [(35)] TJ ET 0.271 0.267 0.267 rg BT 557.230 244.848 Td /F1 9.8 Tf [(. )] TJ ET BT 26.250 232.944 Td /F1 9.8 Tf [(Grosse et al describe this new paradigm shift as a change from viewing newborn screening as an urgent and immediate public )] TJ ET BT 26.250 221.039 Td /F1 9.8 Tf [(health need \(a public health emergency\) to a public health service)] TJ ET 0.267 0.267 0.267 rg BT 310.219 222.546 Td /F4 8.7 Tf [(33)] TJ ET 0.271 0.267 0.267 rg BT 319.856 221.039 Td /F1 9.8 Tf [(. While DMD does not fulfill criteria for newborn screening )] TJ ET BT 26.250 209.134 Td /F1 9.8 Tf [(under the old paradigm of a public health emergency, it could be considered for screening if done as a public health service. In )] TJ ET BT 26.250 197.229 Td /F1 9.8 Tf [(that case, other childhood onset conditions, such as fragile X syndrome \(FXS\), that also are characterized by developmental )] TJ ET BT 26.250 185.325 Td /F1 9.8 Tf [(delay in early childhood, a diagnostic odyssey, and a lack of therapies that can reverse or prevent disease also could be )] TJ ET BT 26.250 173.420 Td /F1 9.8 Tf [(considered. Our results indicated that the majority of parents in our study were interested in DMD screening and likely would )] TJ ET BT 26.250 161.515 Td /F1 9.8 Tf [(have considered screening for other childhood-onset conditions as well. Nevertheless, the timing of screening for these )] TJ ET BT 26.250 149.610 Td /F1 9.8 Tf [(conditions might need to be different from those conditions in which screening clearly is a public health emergency. Although )] TJ ET BT 26.250 137.706 Td /F1 9.8 Tf [(the public health system already is in place for early identification and follow-up of infants affected by DMD, screening for DMD )] TJ ET BT 26.250 125.801 Td /F1 9.8 Tf [(later in infancy could avoid confusion of mingling mandatory and optional screening at birth and could reduce consent and other )] TJ ET BT 26.250 113.896 Td /F1 9.8 Tf [(ethical concerns)] TJ ET 0.267 0.267 0.267 rg BT 96.694 115.403 Td /F4 8.7 Tf [(23)] TJ ET 0.271 0.267 0.267 rg BT 106.331 113.896 Td /F1 9.8 Tf [(. Infant screening for DMD and other childhood-onset conditions could be offered in pediatric offices as an )] TJ ET BT 26.250 101.991 Td /F1 9.8 Tf [(optional public health service outside of newborn screening.)] TJ ET BT 26.250 82.587 Td /F1 9.8 Tf [(This study had several limitations. Although providers broadly supported screening, their questionnaire results must be )] TJ ET BT 26.250 70.682 Td /F1 9.8 Tf [(interpreted with caution because clinic staff was not involved in the more time-consuming aspect of obtaining consent from )] TJ ET BT 26.250 58.777 Td /F1 9.8 Tf [(parents. Having had clinic staff involved in educating potential participants would have enabled all parents of eligible infants to )] TJ ET BT 26.250 46.872 Td /F1 9.8 Tf [(be educated about DMD screening and would have better reflected how screening would be carried out in routine practice. The )] TJ ET Q q 15.000 32.587 577.500 744.413 re W n 0.271 0.267 0.267 rg BT 26.250 767.476 Td /F1 9.8 Tf [(more conditions was indicated if it also increased the number of parents receiving false-positive results.)] TJ ET BT 26.250 748.071 Td /F5 9.8 Tf [(Provider Demographics and Opinions)] TJ ET BT 26.250 728.667 Td /F1 9.8 Tf [(A questionnaire was given to providers to evaluate their opinions about the DMD screening program. A total of 25 providers )] TJ ET BT 26.250 716.762 Td /F1 9.8 Tf [(from three of the four clinics returned surveys. Most of those completing the provider questionnaire were female and White \()] TJ ET BT 26.250 704.857 Td /F4 9.8 Tf [(Table 1)] TJ ET BT 59.849 704.857 Td /F1 9.8 Tf [(\). The majority of providers were nurses or physicians. Nurse practitioners, physician assistants, medical assistants, and )] TJ ET BT 26.250 692.952 Td /F1 9.8 Tf [(laboratory technicians accounted for the rest of providers. All providers specialized in pediatrics and were in private practice in )] TJ ET BT 26.250 681.048 Td /F1 9.8 Tf [(the metropolitan Atlanta area.)] TJ ET BT 26.250 661.643 Td /F1 9.8 Tf [(Information gathered through the provider questionnaire indicated that the majority of these providers were supportive of DMD )] TJ ET BT 26.250 649.738 Td /F1 9.8 Tf [(screening \()] TJ ET BT 74.474 649.738 Td /F4 9.8 Tf [(Table 4)] TJ ET BT 108.072 649.738 Td /F1 9.8 Tf [(\). Providers thought DMD screening could be incorporated easily into practice and that collecting blood, a )] TJ ET BT 26.250 637.833 Td /F1 9.8 Tf [(role that the office staff routinely performed, was not a burden. The majority of providers also thought it was not a burden )] TJ ET BT 26.250 625.929 Td /F1 9.8 Tf [(obtaining consent; however, as they were not involved in gaining parental consent, this could not be verified through practice.)] TJ ET BT 26.250 589.326 Td /F4 12.0 Tf [(Discussion)] TJ ET BT 26.250 569.372 Td /F1 9.8 Tf [(This is the first study in the United States to conduct DMD screening after the newborn period through pediatric care providers. )] TJ ET BT 26.250 557.467 Td /F1 9.8 Tf [(In Germany, where screening occurred through pediatric providers, parents were given information in the birthing hospitals and )] TJ ET BT 26.250 545.562 Td /F1 9.8 Tf [(at pediatricians offices)] TJ ET 0.267 0.267 0.267 rg BT 124.871 547.070 Td /F4 8.7 Tf [(8)] TJ ET BT 129.690 547.070 Td /F4 8.7 Tf [(9)] TJ ET 0.271 0.267 0.267 rg BT 134.509 545.562 Td /F1 9.8 Tf [(. Parents were then able to request screening during one of the well-baby visits from 4 weeks to 1 year )] TJ ET BT 26.250 533.658 Td /F1 9.8 Tf [(of age. Scheuerbrandt et al reported that 14.4% of infant boys born in West Germany in 1983 were screened for DMD, with 65% )] TJ ET BT 26.250 521.753 Td /F1 9.8 Tf [(of screening occurring at the first well-baby check at 4-6 weeks. At that time, they estimated that half the birthing hospitals in )] TJ ET BT 26.250 509.848 Td /F1 9.8 Tf [(West Germany were providing information on screening.)] TJ ET BT 26.250 490.443 Td /F1 9.8 Tf [(Data from our study and from Germany demonstrate the benefits and limitations of infant screening in comparison with newborn )] TJ ET BT 26.250 478.539 Td /F1 9.8 Tf [(screening for DMD. Screening after the newborn period enables some of the ethical issues surrounding newborn screening for )] TJ ET BT 26.250 466.634 Td /F1 9.8 Tf [(DMD to be addressed. Parents could have more time to consider screening in a less hectic environment; our study showed that )] TJ ET BT 26.250 454.729 Td /F1 9.8 Tf [(most parents who chose screening had enough time and were able to understand the risks and benefits of DMD screening. )] TJ ET BT 26.250 442.824 Td /F1 9.8 Tf [(Later time points for screening also provide additional time for parentchild bonding to occur and clearly delineate between )] TJ ET BT 26.250 430.920 Td /F1 9.8 Tf [(optional and mandatory screening. Because CK levels have been shown to be higher in the newborn period)] TJ ET 0.267 0.267 0.267 rg BT 490.155 432.427 Td /F4 8.7 Tf [(31)] TJ ET 0.271 0.267 0.267 rg BT 499.792 430.920 Td /F1 9.8 Tf [(, screening later )] TJ ET BT 26.250 419.015 Td /F1 9.8 Tf [(in infancy when CK levels have normalized can decrease the rate of false positives; in our study, we did not detect any false )] TJ ET BT 26.250 407.110 Td /F1 9.8 Tf [(positives while Scheuerbrandt et al had a low rate of 0.016%)] TJ ET 0.267 0.267 0.267 rg BT 287.462 408.617 Td /F4 8.7 Tf [(8)] TJ ET 0.271 0.267 0.267 rg BT 292.281 407.110 Td /F1 9.8 Tf [(. However, infant screening has several drawbacks when )] TJ ET BT 26.250 395.205 Td /F1 9.8 Tf [(compared with newborn screening for DMD. While infant screening can occur at routine well-baby visits, established systems )] TJ ET BT 26.250 383.301 Td /F1 9.8 Tf [(and policies are not in place for infant screening to be offered universally. Also, the later timing of infant screening means that )] TJ ET BT 26.250 371.396 Td /F1 9.8 Tf [(some parents will not learn about their reproductive risks before having another child. Lastly, parents themselves might prefer )] TJ ET BT 26.250 359.491 Td /F1 9.8 Tf [(screening to occur earlier; in our pilot study, half of the parents who participated preferred newborn screening to screening at a )] TJ ET BT 26.250 347.586 Td /F1 9.8 Tf [(later age. Further analysis of parent preferences and experiences is planned through a direct comparison of questionnaire data )] TJ ET BT 26.250 335.682 Td /F1 9.8 Tf [(from the CDC-funded newborn and infant screening studies.)] TJ ET BT 26.250 316.277 Td /F1 9.8 Tf [(The consideration of DMD newborn or later infant screening represents a recent shift in thinking about benefits not only to the )] TJ ET BT 26.250 304.372 Td /F1 9.8 Tf [(affected child, but also to the family and society)] TJ ET 0.267 0.267 0.267 rg BT 230.561 305.879 Td /F4 8.7 Tf [(32)] TJ ET BT 240.199 305.879 Td /F4 8.7 Tf [(33)] TJ ET 0.271 0.267 0.267 rg BT 249.836 304.372 Td /F1 9.8 Tf [(. Traditionally, benefits have focused on early medical interventions that )] TJ ET BT 26.250 292.467 Td /F1 9.8 Tf [(improve the health outcome of affected children)] TJ ET 0.267 0.267 0.267 rg BT 231.643 293.975 Td /F4 8.7 Tf [(17)] TJ ET 0.271 0.267 0.267 rg BT 241.281 292.467 Td /F1 9.8 Tf [(. However, in 2005, along with proposing updated criteria and a set of 29 core )] TJ ET BT 26.250 280.563 Td /F1 9.8 Tf [(conditions for newborn screening, the American College of Medical Genetics recommended that benefits to the family, )] TJ ET BT 26.250 268.658 Td /F1 9.8 Tf [(providers, and public also should be considered after the best interest of the child)] TJ ET 0.267 0.267 0.267 rg BT 376.343 270.165 Td /F4 8.7 Tf [(34)] TJ ET 0.271 0.267 0.267 rg BT 385.981 268.658 Td /F1 9.8 Tf [(. Recently, the Secretarys Advisory )] TJ ET BT 26.250 256.753 Td /F1 9.8 Tf [(Committee on Heritable Disorders in Newborns and Children, the committee that reviews and recommends conditions for )] TJ ET BT 26.250 244.848 Td /F1 9.8 Tf [(inclusion on newborn screening panels, published evaluation criteria that also consider benefits beyond those of the child)] TJ ET 0.267 0.267 0.267 rg BT 547.592 246.356 Td /F4 8.7 Tf [(35)] TJ ET 0.271 0.267 0.267 rg BT 557.230 244.848 Td /F1 9.8 Tf [(. )] TJ ET BT 26.250 232.944 Td /F1 9.8 Tf [(Grosse et al describe this new paradigm shift as a change from viewing newborn screening as an urgent and immediate public )] TJ ET BT 26.250 221.039 Td /F1 9.8 Tf [(health need \(a public health emergency\) to a public health service)] TJ ET 0.267 0.267 0.267 rg BT 310.219 222.546 Td /F4 8.7 Tf [(33)] TJ ET 0.271 0.267 0.267 rg BT 319.856 221.039 Td /F1 9.8 Tf [(. While DMD does not fulfill criteria for newborn screening )] TJ ET BT 26.250 209.134 Td /F1 9.8 Tf [(under the old paradigm of a public health emergency, it could be considered for screening if done as a public health service. In )] TJ ET BT 26.250 197.229 Td /F1 9.8 Tf [(that case, other childhood onset conditions, such as fragile X syndrome \(FXS\), that also are characterized by developmental )] TJ ET BT 26.250 185.325 Td /F1 9.8 Tf [(delay in early childhood, a diagnostic odyssey, and a lack of therapies that can reverse or prevent disease also could be )] TJ ET BT 26.250 173.420 Td /F1 9.8 Tf [(considered. Our results indicated that the majority of parents in our study were interested in DMD screening and likely would )] TJ ET BT 26.250 161.515 Td /F1 9.8 Tf [(have considered screening for other childhood-onset conditions as well. Nevertheless, the timing of screening for these )] TJ ET BT 26.250 149.610 Td /F1 9.8 Tf [(conditions might need to be different from those conditions in which screening clearly is a public health emergency. Although )] TJ ET BT 26.250 137.706 Td /F1 9.8 Tf [(the public health system already is in place for early identification and follow-up of infants affected by DMD, screening for DMD )] TJ ET BT 26.250 125.801 Td /F1 9.8 Tf [(later in infancy could avoid confusion of mingling mandatory and optional screening at birth and could reduce consent and other )] TJ ET BT 26.250 113.896 Td /F1 9.8 Tf [(ethical concerns)] TJ ET 0.267 0.267 0.267 rg BT 96.694 115.403 Td /F4 8.7 Tf [(23)] TJ ET 0.271 0.267 0.267 rg BT 106.331 113.896 Td /F1 9.8 Tf [(. Infant screening for DMD and other childhood-onset conditions could be offered in pediatric offices as an )] TJ ET BT 26.250 101.991 Td /F1 9.8 Tf [(optional public health service outside of newborn screening.)] TJ ET BT 26.250 82.587 Td /F1 9.8 Tf [(This study had several limitations. Although providers broadly supported screening, their questionnaire results must be )] TJ ET BT 26.250 70.682 Td /F1 9.8 Tf [(interpreted with caution because clinic staff was not involved in the more time-consuming aspect of obtaining consent from )] TJ ET BT 26.250 58.777 Td /F1 9.8 Tf [(parents. Having had clinic staff involved in educating potential participants would have enabled all parents of eligible infants to )] TJ ET BT 26.250 46.872 Td /F1 9.8 Tf [(be educated about DMD screening and would have better reflected how screening would be carried out in routine practice. The )] TJ ET Q q 15.000 32.587 577.500 744.413 re W n 0.271 0.267 0.267 rg BT 26.250 767.476 Td /F1 9.8 Tf [(more conditions was indicated if it also increased the number of parents receiving false-positive results.)] TJ ET BT 26.250 748.071 Td /F5 9.8 Tf [(Provider Demographics and Opinions)] TJ ET BT 26.250 728.667 Td /F1 9.8 Tf [(A questionnaire was given to providers to evaluate their opinions about the DMD screening program. A total of 25 providers )] TJ ET BT 26.250 716.762 Td /F1 9.8 Tf [(from three of the four clinics returned surveys. Most of those completing the provider questionnaire were female and White \()] TJ ET BT 26.250 704.857 Td /F4 9.8 Tf [(Table 1)] TJ ET BT 59.849 704.857 Td /F1 9.8 Tf [(\). The majority of providers were nurses or physicians. Nurse practitioners, physician assistants, medical assistants, and )] TJ ET BT 26.250 692.952 Td /F1 9.8 Tf [(laboratory technicians accounted for the rest of providers. All providers specialized in pediatrics and were in private practice in )] TJ ET BT 26.250 681.048 Td /F1 9.8 Tf [(the metropolitan Atlanta area.)] TJ ET BT 26.250 661.643 Td /F1 9.8 Tf [(Information gathered through the provider questionnaire indicated that the majority of these providers were supportive of DMD )] TJ ET BT 26.250 649.738 Td /F1 9.8 Tf [(screening \()] TJ ET BT 74.474 649.738 Td /F4 9.8 Tf [(Table 4)] TJ ET BT 108.072 649.738 Td /F1 9.8 Tf [(\). Providers thought DMD screening could be incorporated easily into practice and that collecting blood, a )] TJ ET BT 26.250 637.833 Td /F1 9.8 Tf [(role that the office staff routinely performed, was not a burden. The majority of providers also thought it was not a burden )] TJ ET BT 26.250 625.929 Td /F1 9.8 Tf [(obtaining consent; however, as they were not involved in gaining parental consent, this could not be verified through practice.)] TJ ET BT 26.250 589.326 Td /F4 12.0 Tf [(Discussion)] TJ ET BT 26.250 569.372 Td /F1 9.8 Tf [(This is the first study in the United States to conduct DMD screening after the newborn period through pediatric care providers. )] TJ ET BT 26.250 557.467 Td /F1 9.8 Tf [(In Germany, where screening occurred through pediatric providers, parents were given information in the birthing hospitals and )] TJ ET BT 26.250 545.562 Td /F1 9.8 Tf [(at pediatricians offices)] TJ ET 0.267 0.267 0.267 rg BT 124.871 547.070 Td /F4 8.7 Tf [(8)] TJ ET BT 129.690 547.070 Td /F4 8.7 Tf [(9)] TJ ET 0.271 0.267 0.267 rg BT 134.509 545.562 Td /F1 9.8 Tf [(. Parents were then able to request screening during one of the well-baby visits from 4 weeks to 1 year )] TJ ET BT 26.250 533.658 Td /F1 9.8 Tf [(of age. Scheuerbrandt et al reported that 14.4% of infant boys born in West Germany in 1983 were screened for DMD, with 65% )] TJ ET BT 26.250 521.753 Td /F1 9.8 Tf [(of screening occurring at the first well-baby check at 4-6 weeks. At that time, they estimated that half the birthing hospitals in )] TJ ET BT 26.250 509.848 Td /F1 9.8 Tf [(West Germany were providing information on screening.)] TJ ET BT 26.250 490.443 Td /F1 9.8 Tf [(Data from our study and from Germany demonstrate the benefits and limitations of infant screening in comparison with newborn )] TJ ET BT 26.250 478.539 Td /F1 9.8 Tf [(screening for DMD. Screening after the newborn period enables some of the ethical issues surrounding newborn screening for )] TJ ET BT 26.250 466.634 Td /F1 9.8 Tf [(DMD to be addressed. Parents could have more time to consider screening in a less hectic environment; our study showed that )] TJ ET BT 26.250 454.729 Td /F1 9.8 Tf [(most parents who chose screening had enough time and were able to understand the risks and benefits of DMD screening. )] TJ ET BT 26.250 442.824 Td /F1 9.8 Tf [(Later time points for screening also provide additional time for parentchild bonding to occur and clearly delineate between )] TJ ET BT 26.250 430.920 Td /F1 9.8 Tf [(optional and mandatory screening. Because CK levels have been shown to be higher in the newborn period)] TJ ET 0.267 0.267 0.267 rg BT 490.155 432.427 Td /F4 8.7 Tf [(31)] TJ ET 0.271 0.267 0.267 rg BT 499.792 430.920 Td /F1 9.8 Tf [(, screening later )] TJ ET BT 26.250 419.015 Td /F1 9.8 Tf [(in infancy when CK levels have normalized can decrease the rate of false positives; in our study, we did not detect any false )] TJ ET BT 26.250 407.110 Td /F1 9.8 Tf [(positives while Scheuerbrandt et al had a low rate of 0.016%)] TJ ET 0.267 0.267 0.267 rg BT 287.462 408.617 Td /F4 8.7 Tf [(8)] TJ ET 0.271 0.267 0.267 rg BT 292.281 407.110 Td /F1 9.8 Tf [(. However, infant screening has several drawbacks when )] TJ ET BT 26.250 395.205 Td /F1 9.8 Tf [(compared with newborn screening for DMD. While infant screening can occur at routine well-baby visits, established systems )] TJ ET BT 26.250 383.301 Td /F1 9.8 Tf [(and policies are not in place for infant screening to be offered universally. Also, the later timing of infant screening means that )] TJ ET BT 26.250 371.396 Td /F1 9.8 Tf [(some parents will not learn about their reproductive risks before having another child. Lastly, parents themselves might prefer )] TJ ET BT 26.250 359.491 Td /F1 9.8 Tf [(screening to occur earlier; in our pilot study, half of the parents who participated preferred newborn screening to screening at a )] TJ ET BT 26.250 347.586 Td /F1 9.8 Tf [(later age. Further analysis of parent preferences and experiences is planned through a direct comparison of questionnaire data )] TJ ET BT 26.250 335.682 Td /F1 9.8 Tf [(from the CDC-funded newborn and infant screening studies.)] TJ ET BT 26.250 316.277 Td /F1 9.8 Tf [(The consideration of DMD newborn or later infant screening represents a recent shift in thinking about benefits not only to the )] TJ ET BT 26.250 304.372 Td /F1 9.8 Tf [(affected child, but also to the family and society)] TJ ET 0.267 0.267 0.267 rg BT 230.561 305.879 Td /F4 8.7 Tf [(32)] TJ ET BT 240.199 305.879 Td /F4 8.7 Tf [(33)] TJ ET 0.271 0.267 0.267 rg BT 249.836 304.372 Td /F1 9.8 Tf [(. Traditionally, benefits have focused on early medical interventions that )] TJ ET BT 26.250 292.467 Td /F1 9.8 Tf [(improve the health outcome of affected children)] TJ ET 0.267 0.267 0.267 rg BT 231.643 293.975 Td /F4 8.7 Tf [(17)] TJ ET 0.271 0.267 0.267 rg BT 241.281 292.467 Td /F1 9.8 Tf [(. However, in 2005, along with proposing updated criteria and a set of 29 core )] TJ ET BT 26.250 280.563 Td /F1 9.8 Tf [(conditions for newborn screening, the American College of Medical Genetics recommended that benefits to the family, )] TJ ET BT 26.250 268.658 Td /F1 9.8 Tf [(providers, and public also should be considered after the best interest of the child)] TJ ET 0.267 0.267 0.267 rg BT 376.343 270.165 Td /F4 8.7 Tf [(34)] TJ ET 0.271 0.267 0.267 rg BT 385.981 268.658 Td /F1 9.8 Tf [(. Recently, the Secretarys Advisory )] TJ ET BT 26.250 256.753 Td /F1 9.8 Tf [(Committee on Heritable Disorders in Newborns and Children, the committee that reviews and recommends conditions for )] TJ ET BT 26.250 244.848 Td /F1 9.8 Tf [(inclusion on newborn screening panels, published evaluation criteria that also consider benefits beyond those of the child)] TJ ET 0.267 0.267 0.267 rg BT 547.592 246.356 Td /F4 8.7 Tf [(35)] TJ ET 0.271 0.267 0.267 rg BT 557.230 244.848 Td /F1 9.8 Tf [(. )] TJ ET BT 26.250 232.944 Td /F1 9.8 Tf [(Grosse et al describe this new paradigm shift as a change from viewing newborn screening as an urgent and immediate public )] TJ ET BT 26.250 221.039 Td /F1 9.8 Tf [(health need \(a public health emergency\) to a public health service)] TJ ET 0.267 0.267 0.267 rg BT 310.219 222.546 Td /F4 8.7 Tf [(33)] TJ ET 0.271 0.267 0.267 rg BT 319.856 221.039 Td /F1 9.8 Tf [(. While DMD does not fulfill criteria for newborn screening )] TJ ET BT 26.250 209.134 Td /F1 9.8 Tf [(under the old paradigm of a public health emergency, it could be considered for screening if done as a public health service. In )] TJ ET BT 26.250 197.229 Td /F1 9.8 Tf [(that case, other childhood onset conditions, such as fragile X syndrome \(FXS\), that also are characterized by developmental )] TJ ET BT 26.250 185.325 Td /F1 9.8 Tf [(delay in early childhood, a diagnostic odyssey, and a lack of therapies that can reverse or prevent disease also could be )] TJ ET BT 26.250 173.420 Td /F1 9.8 Tf [(considered. Our results indicated that the majority of parents in our study were interested in DMD screening and likely would )] TJ ET BT 26.250 161.515 Td /F1 9.8 Tf [(have considered screening for other childhood-onset conditions as well. Nevertheless, the timing of screening for these )] TJ ET BT 26.250 149.610 Td /F1 9.8 Tf [(conditions might need to be different from those conditions in which screening clearly is a public health emergency. Although )] TJ ET BT 26.250 137.706 Td /F1 9.8 Tf [(the public health system already is in place for early identification and follow-up of infants affected by DMD, screening for DMD )] TJ ET BT 26.250 125.801 Td /F1 9.8 Tf [(later in infancy could avoid confusion of mingling mandatory and optional screening at birth and could reduce consent and other )] TJ ET BT 26.250 113.896 Td /F1 9.8 Tf [(ethical concerns)] TJ ET 0.267 0.267 0.267 rg BT 96.694 115.403 Td /F4 8.7 Tf [(23)] TJ ET 0.271 0.267 0.267 rg BT 106.331 113.896 Td /F1 9.8 Tf [(. Infant screening for DMD and other childhood-onset conditions could be offered in pediatric offices as an )] TJ ET BT 26.250 101.991 Td /F1 9.8 Tf [(optional public health service outside of newborn screening.)] TJ ET BT 26.250 82.587 Td /F1 9.8 Tf [(This study had several limitations. Although providers broadly supported screening, their questionnaire results must be )] TJ ET BT 26.250 70.682 Td /F1 9.8 Tf [(interpreted with caution because clinic staff was not involved in the more time-consuming aspect of obtaining consent from )] TJ ET BT 26.250 58.777 Td /F1 9.8 Tf [(parents. Having had clinic staff involved in educating potential participants would have enabled all parents of eligible infants to )] TJ ET BT 26.250 46.872 Td /F1 9.8 Tf [(be educated about DMD screening and would have better reflected how screening would be carried out in routine practice. The )] TJ ET Q q 0.000 0.000 0.000 rg BT 291.710 19.825 Td /F1 11.0 Tf [(7)] TJ ET BT 25.000 19.825 Td /F1 11.0 Tf [(PLOS Currents Muscular Dystrophy)] TJ ET Q endstream endobj 315 0 obj << /Type /Annot /Subtype /Link /A 316 0 R /Border [0 0 0] /H /I /Rect [ 124.8713 546.2679 129.6899 555.0862 ] >> endobj 316 0 obj << /Type /Action >> endobj 317 0 obj << /Type /Annot /Subtype /Link /A 318 0 R /Border [0 0 0] /H /I /Rect [ 129.6899 546.2679 134.5086 555.0862 ] >> endobj 318 0 obj << /Type /Action >> endobj 319 0 obj << /Type /Annot /Subtype /Link /A 320 0 R /Border [0 0 0] /H /I /Rect [ 490.1550 431.6252 499.7923 440.4435 ] >> endobj 320 0 obj << /Type /Action >> endobj 321 0 obj << /Type /Annot /Subtype /Link /A 322 0 R /Border [0 0 0] /H /I /Rect [ 287.4622 407.8157 292.2809 416.6340 ] >> endobj 322 0 obj << /Type /Action >> endobj 323 0 obj << /Type /Annot /Subtype /Link /A 324 0 R /Border [0 0 0] /H /I /Rect [ 230.5613 305.0777 240.1986 313.8960 ] >> endobj 324 0 obj << /Type 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educated. While clinics where recruitment occurred served diverse patient )] TJ ET BT 26.250 755.571 Td /F1 9.8 Tf [(populations, those with larger minority populations had a higher number of patients who did not keep, rescheduled, or cancelled )] TJ ET BT 26.250 743.667 Td /F1 9.8 Tf [(their appointments, making recruitment more difficult at these locations. Only about half of the participants completed the post-)] TJ ET BT 26.250 731.762 Td /F1 9.8 Tf [(screening questionnaire and only about 20 decliners and 20 providers completed their questionnaires. The relatively small )] TJ ET BT 26.250 719.857 Td /F1 9.8 Tf [(sample sizes for each type of questionnaire made it difficult to make meaningful comparisons between respondents and further )] TJ ET BT 26.250 707.952 Td /F1 9.8 Tf [(reduced our ability to generalize the results to other populations. Since all infants had normal CK results, we were unable to )] TJ ET BT 26.250 696.048 Td /F1 9.8 Tf [(evaluate the experiences of parents whose sons screened positive and the laboratory and clinical protocols for follow-up of )] TJ ET BT 26.250 684.143 Td /F1 9.8 Tf [(infants with elevated CK.)] TJ ET BT 26.250 664.738 Td /F1 9.8 Tf [(Future studies will need to address several issues before DMD screening by pediatric providers can be incorporated into routine )] TJ ET BT 26.250 652.833 Td /F1 9.8 Tf [(practice. Investigators conducting future infant screening studies should utilize clinic staff in conducting recruitment and )] TJ ET BT 26.250 640.929 Td /F1 9.8 Tf [(obtaining parental consent, recruit a larger number of participants to determine the experience and test the follow-up of families )] TJ ET BT 26.250 629.024 Td /F1 9.8 Tf [(with positive DMD results, evaluate the cost of screening, and ensure the participation of clinics \(pediatric, family practice, and )] TJ ET BT 26.250 617.119 Td /F1 9.8 Tf [(community clinics\) that serve diverse pediatric populations. Having both the support and involvement of the clinic staff is )] TJ ET BT 26.250 605.214 Td /F1 9.8 Tf [(essential. Kemper and Bailey recently surveyed pediatricians on their knowledge and attitudes toward FXS screening by posing )] TJ ET BT 26.250 593.310 Td /F1 9.8 Tf [(scenarios of screening at birth through traditional newborn screening or at 12 months of age through pediatric providers)] TJ ET 0.267 0.267 0.267 rg BT 540.533 594.817 Td /F4 8.7 Tf [(36)] TJ ET 0.271 0.267 0.267 rg BT 550.171 593.310 Td /F1 9.8 Tf [(. FXS )] TJ ET BT 26.250 581.405 Td /F1 9.8 Tf [(is similar to DMD in that both are genetic conditions for which \(1\) affected children are brought to medical attention through )] TJ ET BT 26.250 569.500 Td /F1 9.8 Tf [(delays in development, \(2\) supportive therapies exist but there is no cure, and \(3\) diagnostic delay is common. Their results )] TJ ET BT 26.250 557.595 Td /F1 9.8 Tf [(showed that 55% of respondents were supportive of FXS screening when infants were 12 months of age; however, 34% )] TJ ET BT 26.250 545.691 Td /F1 9.8 Tf [(thought routine visits were too busy to include screening and only 39% felt comfortable discussing FXS with patients. While our )] TJ ET BT 26.250 533.786 Td /F1 9.8 Tf [(study showed a higher proportion \(63%\) of clinical staff felt comfortable discussing DMD, both studies highlighted the need for )] TJ ET BT 26.250 521.881 Td /F1 9.8 Tf [(provider education if they are to be involved in the screening process. In future studies, investigators will need to educate )] TJ ET BT 26.250 509.976 Td /F1 9.8 Tf [(pediatric health care providers on DMD screening and provide them with informational resources for their patients. It also will be )] TJ ET BT 26.250 498.072 Td /F1 9.8 Tf [(important to consult with providers about efficient ways to include screening that minimize the effects on routine practice.)] TJ ET BT 26.250 478.667 Td /F1 9.8 Tf [(This is the first study in the United States to conduct DMD screening after the newborn period. Parents and providers indicated )] TJ ET BT 26.250 466.762 Td /F1 9.8 Tf [(broad support of voluntary DMD screening. Parents understood the risks and benefits of screening so that they could make )] TJ ET BT 26.250 454.857 Td /F1 9.8 Tf [(informed choices. Our study indicated that DMD screening is feasible in a pediatric office. However, if infant screening for DMD )] TJ ET BT 26.250 442.953 Td /F1 9.8 Tf [(and other childhood-onset conditions eventually is to be offered in pediatric provider offices as an optional public health service )] TJ ET BT 26.250 431.048 Td /F1 9.8 Tf [(outside of newborn screening, future studies will need to assess the feasibility of DMD screening in routine practice by having )] TJ ET BT 26.250 419.143 Td /F1 9.8 Tf [(providers play a larger role in educating and obtaining consent from parents. It is evident that larger studies and more public )] TJ ET BT 26.250 407.238 Td /F1 9.8 Tf [(discussion need to occur before routine DMD infant screening can become a reality.)] TJ ET BT 26.250 370.636 Td /F4 12.0 Tf [(Acknowledgments)] TJ ET BT 26.250 350.682 Td /F1 9.8 Tf [(We acknowledge several colleagues who were instrumental in conducting this study: Dr. Chunli Yu, Dr. Brad Coffee, Leonard )] TJ ET BT 26.250 338.777 Td /F1 9.8 Tf [(Arthur, Barbara Adam, and Elizabeth McCown for developing, validating, and performing the laboratory testing; Hollie Lawyer )] TJ ET BT 26.250 326.872 Td /F1 9.8 Tf [(and Aneidra Leysath for their role in educating and obtaining consent from parents; and Dr. Katherine Kolor for early )] TJ ET BT 26.250 314.967 Td /F1 9.8 Tf [(involvement in planning the study. We also acknowledge advisory board members for their guidance and oversight of the study. )] TJ ET BT 26.250 303.063 Td /F1 9.8 Tf [(Finally, we thank the staff of the four participating pediatric clinics, and the parents and their sons who participated in the study.)] TJ ET BT 26.250 283.658 Td /F1 9.8 Tf [(We would like to acknowledge our friend and colleague, Dr. Paul Fernhoff, who recently passed away. He worked tirelessly to )] TJ ET BT 26.250 271.753 Td /F1 9.8 Tf [(improve the lives of children and families affected by genetic conditions and he will be greatly missed.)] TJ ET BT 26.250 235.151 Td /F4 12.0 Tf [(Abbreviations List)] TJ ET BT 26.250 215.196 Td /F1 9.8 Tf [(DMD Duchenne muscular dystrophy)] TJ ET BT 26.250 195.792 Td /F1 9.8 Tf [(CK Creatine kinase)] TJ ET BT 26.250 176.387 Td /F1 9.8 Tf [(IRB Institutional review board)] TJ ET BT 26.250 156.982 Td /F1 9.8 Tf [(CDC Centers for Disease Control and Prevention)] TJ ET BT 26.250 137.577 Td /F1 9.8 Tf [(FXS Fragile X syndrome)] TJ ET BT 26.250 100.975 Td /F4 12.0 Tf [(APPENDIX 1)] TJ ET BT 26.250 63.823 Td /F4 12.0 Tf [(Infant Screening for Duchenne Muscular Dystrophy \(DMD\) - Survey A)] TJ ET Q q 15.000 53.392 577.500 723.608 re W n 0.271 0.267 0.267 rg BT 26.250 767.476 Td /F1 9.8 Tf [(study population was primarily White and highly educated. While clinics where recruitment occurred served diverse patient )] TJ ET BT 26.250 755.571 Td /F1 9.8 Tf [(populations, those with larger minority populations had a higher number of patients who did not keep, rescheduled, or cancelled )] TJ ET BT 26.250 743.667 Td /F1 9.8 Tf [(their appointments, making recruitment more difficult at these locations. Only about half of the participants completed the post-)] TJ ET BT 26.250 731.762 Td /F1 9.8 Tf [(screening questionnaire and only about 20 decliners and 20 providers completed their questionnaires. The relatively small )] TJ ET BT 26.250 719.857 Td /F1 9.8 Tf [(sample sizes for each type of questionnaire made it difficult to make meaningful comparisons between respondents and further )] TJ ET BT 26.250 707.952 Td /F1 9.8 Tf [(reduced our ability to generalize the results to other populations. Since all infants had normal CK results, we were unable to )] TJ ET BT 26.250 696.048 Td /F1 9.8 Tf [(evaluate the experiences of parents whose sons screened positive and the laboratory and clinical protocols for follow-up of )] TJ ET BT 26.250 684.143 Td /F1 9.8 Tf [(infants with elevated CK.)] TJ ET BT 26.250 664.738 Td /F1 9.8 Tf [(Future studies will need to address several issues before DMD screening by pediatric providers can be incorporated into routine )] TJ ET BT 26.250 652.833 Td /F1 9.8 Tf [(practice. Investigators conducting future infant screening studies should utilize clinic staff in conducting recruitment and )] TJ ET BT 26.250 640.929 Td /F1 9.8 Tf [(obtaining parental consent, recruit a larger number of participants to determine the experience and test the follow-up of families )] TJ ET BT 26.250 629.024 Td /F1 9.8 Tf [(with positive DMD results, evaluate the cost of screening, and ensure the participation of clinics \(pediatric, family practice, and )] TJ ET BT 26.250 617.119 Td /F1 9.8 Tf [(community clinics\) that serve diverse pediatric populations. Having both the support and involvement of the clinic staff is )] TJ ET BT 26.250 605.214 Td /F1 9.8 Tf [(essential. Kemper and Bailey recently surveyed pediatricians on their knowledge and attitudes toward FXS screening by posing )] TJ ET BT 26.250 593.310 Td /F1 9.8 Tf [(scenarios of screening at birth through traditional newborn screening or at 12 months of age through pediatric providers)] TJ ET 0.267 0.267 0.267 rg BT 540.533 594.817 Td /F4 8.7 Tf [(36)] TJ ET 0.271 0.267 0.267 rg BT 550.171 593.310 Td /F1 9.8 Tf [(. FXS )] TJ ET BT 26.250 581.405 Td /F1 9.8 Tf [(is similar to DMD in that both are genetic conditions for which \(1\) affected children are brought to medical attention through )] TJ ET BT 26.250 569.500 Td /F1 9.8 Tf [(delays in development, \(2\) supportive therapies exist but there is no cure, and \(3\) diagnostic delay is common. Their results )] TJ ET BT 26.250 557.595 Td /F1 9.8 Tf [(showed that 55% of respondents were supportive of FXS screening when infants were 12 months of age; however, 34% )] TJ ET BT 26.250 545.691 Td /F1 9.8 Tf [(thought routine visits were too busy to include screening and only 39% felt comfortable discussing FXS with patients. While our )] TJ ET BT 26.250 533.786 Td /F1 9.8 Tf [(study showed a higher proportion \(63%\) of clinical staff felt comfortable discussing DMD, both studies highlighted the need for )] TJ ET BT 26.250 521.881 Td /F1 9.8 Tf [(provider education if they are to be involved in the screening process. In future studies, investigators will need to educate )] TJ ET BT 26.250 509.976 Td /F1 9.8 Tf [(pediatric health care providers on DMD screening and provide them with informational resources for their patients. It also will be )] TJ ET BT 26.250 498.072 Td /F1 9.8 Tf [(important to consult with providers about efficient ways to include screening that minimize the effects on routine practice.)] TJ ET BT 26.250 478.667 Td /F1 9.8 Tf [(This is the first study in the United States to conduct DMD screening after the newborn period. Parents and providers indicated )] TJ ET BT 26.250 466.762 Td /F1 9.8 Tf [(broad support of voluntary DMD screening. Parents understood the risks and benefits of screening so that they could make )] TJ ET BT 26.250 454.857 Td /F1 9.8 Tf [(informed choices. Our study indicated that DMD screening is feasible in a pediatric office. However, if infant screening for DMD )] TJ ET BT 26.250 442.953 Td /F1 9.8 Tf [(and other childhood-onset conditions eventually is to be offered in pediatric provider offices as an optional public health service )] TJ ET BT 26.250 431.048 Td /F1 9.8 Tf [(outside of newborn screening, future studies will need to assess the feasibility of DMD screening in routine practice by having )] TJ ET BT 26.250 419.143 Td /F1 9.8 Tf [(providers play a larger role in educating and obtaining consent from parents. It is evident that larger studies and more public )] TJ ET BT 26.250 407.238 Td /F1 9.8 Tf [(discussion need to occur before routine DMD infant screening can become a reality.)] TJ ET BT 26.250 370.636 Td /F4 12.0 Tf [(Acknowledgments)] TJ ET BT 26.250 350.682 Td /F1 9.8 Tf [(We acknowledge several colleagues who were instrumental in conducting this study: Dr. Chunli Yu, Dr. Brad Coffee, Leonard )] TJ ET BT 26.250 338.777 Td /F1 9.8 Tf [(Arthur, Barbara Adam, and Elizabeth McCown for developing, validating, and performing the laboratory testing; Hollie Lawyer )] TJ ET BT 26.250 326.872 Td /F1 9.8 Tf [(and Aneidra Leysath for their role in educating and obtaining consent from parents; and Dr. Katherine Kolor for early )] TJ ET BT 26.250 314.967 Td /F1 9.8 Tf [(involvement in planning the study. We also acknowledge advisory board members for their guidance and oversight of the study. )] TJ ET BT 26.250 303.063 Td /F1 9.8 Tf [(Finally, we thank the staff of the four participating pediatric clinics, and the parents and their sons who participated in the study.)] TJ ET BT 26.250 283.658 Td /F1 9.8 Tf [(We would like to acknowledge our friend and colleague, Dr. Paul Fernhoff, who recently passed away. He worked tirelessly to )] TJ ET BT 26.250 271.753 Td /F1 9.8 Tf [(improve the lives of children and families affected by genetic conditions and he will be greatly missed.)] TJ ET BT 26.250 235.151 Td /F4 12.0 Tf [(Abbreviations List)] TJ ET BT 26.250 215.196 Td /F1 9.8 Tf [(DMD Duchenne muscular dystrophy)] TJ ET BT 26.250 195.792 Td /F1 9.8 Tf [(CK Creatine kinase)] TJ ET BT 26.250 176.387 Td /F1 9.8 Tf [(IRB Institutional review board)] TJ ET BT 26.250 156.982 Td /F1 9.8 Tf [(CDC Centers for Disease Control and Prevention)] TJ ET BT 26.250 137.577 Td /F1 9.8 Tf [(FXS Fragile X syndrome)] TJ ET BT 26.250 100.975 Td /F4 12.0 Tf [(APPENDIX 1)] TJ ET BT 26.250 63.823 Td /F4 12.0 Tf [(Infant Screening for Duchenne Muscular Dystrophy \(DMD\) - Survey A)] TJ ET Q q 15.000 53.392 577.500 723.608 re W n 0.271 0.267 0.267 rg BT 26.250 767.476 Td /F1 9.8 Tf [(study population was primarily White and highly educated. While clinics where recruitment occurred served diverse patient )] TJ ET BT 26.250 755.571 Td /F1 9.8 Tf [(populations, those with larger minority populations had a higher number of patients who did not keep, rescheduled, or cancelled )] TJ ET BT 26.250 743.667 Td /F1 9.8 Tf [(their appointments, making recruitment more difficult at these locations. Only about half of the participants completed the post-)] TJ ET BT 26.250 731.762 Td /F1 9.8 Tf [(screening questionnaire and only about 20 decliners and 20 providers completed their questionnaires. The relatively small )] TJ ET BT 26.250 719.857 Td /F1 9.8 Tf [(sample sizes for each type of questionnaire made it difficult to make meaningful comparisons between respondents and further )] TJ ET BT 26.250 707.952 Td /F1 9.8 Tf [(reduced our ability to generalize the results to other populations. Since all infants had normal CK results, we were unable to )] TJ ET BT 26.250 696.048 Td /F1 9.8 Tf [(evaluate the experiences of parents whose sons screened positive and the laboratory and clinical protocols for follow-up of )] TJ ET BT 26.250 684.143 Td /F1 9.8 Tf [(infants with elevated CK.)] TJ ET BT 26.250 664.738 Td /F1 9.8 Tf [(Future studies will need to address several issues before DMD screening by pediatric providers can be incorporated into routine )] TJ ET BT 26.250 652.833 Td /F1 9.8 Tf [(practice. Investigators conducting future infant screening studies should utilize clinic staff in conducting recruitment and )] TJ ET BT 26.250 640.929 Td /F1 9.8 Tf [(obtaining parental consent, recruit a larger number of participants to determine the experience and test the follow-up of families )] TJ ET BT 26.250 629.024 Td /F1 9.8 Tf [(with positive DMD results, evaluate the cost of screening, and ensure the participation of clinics \(pediatric, family practice, and )] TJ ET BT 26.250 617.119 Td /F1 9.8 Tf [(community clinics\) that serve diverse pediatric populations. Having both the support and involvement of the clinic staff is )] TJ ET BT 26.250 605.214 Td /F1 9.8 Tf [(essential. Kemper and Bailey recently surveyed pediatricians on their knowledge and attitudes toward FXS screening by posing )] TJ ET BT 26.250 593.310 Td /F1 9.8 Tf [(scenarios of screening at birth through traditional newborn screening or at 12 months of age through pediatric providers)] TJ ET 0.267 0.267 0.267 rg BT 540.533 594.817 Td /F4 8.7 Tf [(36)] TJ ET 0.271 0.267 0.267 rg BT 550.171 593.310 Td /F1 9.8 Tf [(. FXS )] TJ ET BT 26.250 581.405 Td /F1 9.8 Tf [(is similar to DMD in that both are genetic conditions for which \(1\) affected children are brought to medical attention through )] TJ ET BT 26.250 569.500 Td /F1 9.8 Tf [(delays in development, \(2\) supportive therapies exist but there is no cure, and \(3\) diagnostic delay is common. Their results )] TJ ET BT 26.250 557.595 Td /F1 9.8 Tf [(showed that 55% of respondents were supportive of FXS screening when infants were 12 months of age; however, 34% )] TJ ET BT 26.250 545.691 Td /F1 9.8 Tf [(thought routine visits were too busy to include screening and only 39% felt comfortable discussing FXS with patients. While our )] TJ ET BT 26.250 533.786 Td /F1 9.8 Tf [(study showed a higher proportion \(63%\) of clinical staff felt comfortable discussing DMD, both studies highlighted the need for )] TJ ET BT 26.250 521.881 Td /F1 9.8 Tf [(provider education if they are to be involved in the screening process. In future studies, investigators will need to educate )] TJ ET BT 26.250 509.976 Td /F1 9.8 Tf [(pediatric health care providers on DMD screening and provide them with informational resources for their patients. It also will be )] TJ ET BT 26.250 498.072 Td /F1 9.8 Tf [(important to consult with providers about efficient ways to include screening that minimize the effects on routine practice.)] TJ ET BT 26.250 478.667 Td /F1 9.8 Tf [(This is the first study in the United States to conduct DMD screening after the newborn period. Parents and providers indicated )] TJ ET BT 26.250 466.762 Td /F1 9.8 Tf [(broad support of voluntary DMD screening. Parents understood the risks and benefits of screening so that they could make )] TJ ET BT 26.250 454.857 Td /F1 9.8 Tf [(informed choices. Our study indicated that DMD screening is feasible in a pediatric office. However, if infant screening for DMD )] TJ ET BT 26.250 442.953 Td /F1 9.8 Tf [(and other childhood-onset conditions eventually is to be offered in pediatric provider offices as an optional public health service )] TJ ET BT 26.250 431.048 Td /F1 9.8 Tf [(outside of newborn screening, future studies will need to assess the feasibility of DMD screening in routine practice by having )] TJ ET BT 26.250 419.143 Td /F1 9.8 Tf [(providers play a larger role in educating and obtaining consent from parents. It is evident that larger studies and more public )] TJ ET BT 26.250 407.238 Td /F1 9.8 Tf [(discussion need to occur before routine DMD infant screening can become a reality.)] TJ ET BT 26.250 370.636 Td /F4 12.0 Tf [(Acknowledgments)] TJ ET BT 26.250 350.682 Td /F1 9.8 Tf [(We acknowledge several colleagues who were instrumental in conducting this study: Dr. Chunli Yu, Dr. Brad Coffee, Leonard )] TJ ET BT 26.250 338.777 Td /F1 9.8 Tf [(Arthur, Barbara Adam, and Elizabeth McCown for developing, validating, and performing the laboratory testing; Hollie Lawyer )] TJ ET BT 26.250 326.872 Td /F1 9.8 Tf [(and Aneidra Leysath for their role in educating and obtaining consent from parents; and Dr. Katherine Kolor for early )] TJ ET BT 26.250 314.967 Td /F1 9.8 Tf [(involvement in planning the study. We also acknowledge advisory board members for their guidance and oversight of the study. )] TJ ET BT 26.250 303.063 Td /F1 9.8 Tf [(Finally, we thank the staff of the four participating pediatric clinics, and the parents and their sons who participated in the study.)] TJ ET BT 26.250 283.658 Td /F1 9.8 Tf [(We would like to acknowledge our friend and colleague, Dr. Paul Fernhoff, who recently passed away. He worked tirelessly to )] TJ ET BT 26.250 271.753 Td /F1 9.8 Tf [(improve the lives of children and families affected by genetic conditions and he will be greatly missed.)] TJ ET BT 26.250 235.151 Td /F4 12.0 Tf [(Abbreviations List)] TJ ET BT 26.250 215.196 Td /F1 9.8 Tf [(DMD Duchenne muscular dystrophy)] TJ ET BT 26.250 195.792 Td /F1 9.8 Tf [(CK Creatine kinase)] TJ ET BT 26.250 176.387 Td /F1 9.8 Tf [(IRB Institutional review board)] TJ ET BT 26.250 156.982 Td /F1 9.8 Tf [(CDC Centers for Disease Control and Prevention)] TJ ET BT 26.250 137.577 Td /F1 9.8 Tf [(FXS Fragile X syndrome)] TJ ET BT 26.250 100.975 Td /F4 12.0 Tf [(APPENDIX 1)] TJ ET BT 26.250 63.823 Td /F4 12.0 Tf [(Infant Screening for Duchenne Muscular Dystrophy \(DMD\) - Survey A)] TJ ET Q q 0.000 0.000 0.000 rg BT 291.710 19.825 Td /F1 11.0 Tf [(8)] TJ ET BT 25.000 19.825 Td /F1 11.0 Tf [(PLOS Currents Muscular Dystrophy)] TJ ET Q endstream endobj 383 0 obj << /Type /Annot /Subtype /Link /A 384 0 R /Border [0 0 0] /H /I /Rect [ 540.5332 594.0152 550.1706 602.8335 ] >> endobj 384 0 obj << /Type /Action >> endobj 385 0 obj << /Type /Annot /Subtype /Link /A 386 0 R /Border [0 0 0] /H /I /Rect [ 540.5332 594.0152 550.1706 602.8335 ] >> endobj 386 0 obj << /Type /Action >> endobj 387 0 obj << /Type /Annot /Subtype /Link /A 388 0 R /Border [0 0 0] /H /I /Rect [ 540.5332 594.0152 550.1706 602.8335 ] >> endobj 388 0 obj << /Type /Action >> endobj 389 0 obj << /Type /Page /Parent 3 0 R /Annots [ 391 0 R 395 0 R 399 0 R 403 0 R 407 0 R 411 0 R 415 0 R 419 0 R 423 0 R ] /Contents 390 0 R >> endobj 390 0 obj << /Length 4132 >> stream 0.271 0.267 0.267 rg q 15.000 -18.559 577.500 795.559 re W n 0.965 0.965 0.965 rg 26.250 507.095 555.000 269.905 re f 0.267 0.267 0.267 rg 0.267 0.267 0.267 RG 26.250 777.000 m 581.250 777.000 l 581.250 776.250 l 26.250 776.250 l f 26.250 507.095 m 581.250 507.095 l 581.250 507.845 l 26.250 507.845 l f q 173.250 0 0 225.000 35.250 542.250 cm /I4 Do Q q 35.250 518.345 537.000 17.905 re W n 0.271 0.267 0.267 rg BT 35.250 526.726 Td /F4 9.8 Tf [(Fig. 1: Infant Screening for Duchenne Muscular Dystrophy \(DMD\) - 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Newborn screening for Duchenne muscular dystrophy. Semin Neonatal. 1998;3:27-34.)] TJ ET BT 26.250 150.151 Td /F1 9.8 Tf [(2.)] TJ ET BT 38.132 150.151 Td /F1 9.8 Tf [(Drousiotou A, Ioannou P, Georgiou T, et al. Neonatal screening for Duchenne muscular dystrophy: a novel semiquantitative )] TJ ET BT 26.250 138.246 Td /F1 9.8 Tf [(application of the bioluminescence test for creatine kinase in a pilot national program in Cyprus. Genet Test. 1998;2\(1\):55-60.)] TJ ET BT 26.250 118.842 Td /F1 9.8 Tf [(3.)] TJ ET BT 38.132 118.842 Td /F1 9.8 Tf [(Emery AE. Duchenne Muscular Dystrophy. 2nd ed. New York: Oxford University Press; 1987.)] TJ ET BT 26.250 99.437 Td /F1 9.8 Tf [(4.)] TJ ET BT 38.132 99.437 Td /F1 9.8 Tf [(Ciafaloni E, Fox DJ, Pandya S, et al. Delayed diagnosis in Duchenne muscular dystrophy: data from the Muscular Dystrophy )] TJ ET BT 26.250 87.532 Td /F1 9.8 Tf [(Surveillance, Tracking, and Research Network \(MD STARnet\). J Pediatr. 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Newborn screening for Duchenne muscular dystrophy. Semin Neonatal. 1998;3:27-34.)] TJ ET BT 26.250 150.151 Td /F1 9.8 Tf [(2.)] TJ ET BT 38.132 150.151 Td /F1 9.8 Tf [(Drousiotou A, Ioannou P, Georgiou T, et al. Neonatal screening for Duchenne muscular dystrophy: a novel semiquantitative )] TJ ET BT 26.250 138.246 Td /F1 9.8 Tf [(application of the bioluminescence test for creatine kinase in a pilot national program in Cyprus. Genet Test. 1998;2\(1\):55-60.)] TJ ET BT 26.250 118.842 Td /F1 9.8 Tf [(3.)] TJ ET BT 38.132 118.842 Td /F1 9.8 Tf [(Emery AE. Duchenne Muscular Dystrophy. 2nd ed. New York: Oxford University Press; 1987.)] TJ ET BT 26.250 99.437 Td /F1 9.8 Tf [(4.)] TJ ET BT 38.132 99.437 Td /F1 9.8 Tf [(Ciafaloni E, Fox DJ, Pandya S, et al. Delayed diagnosis in Duchenne muscular dystrophy: data from the Muscular Dystrophy )] TJ ET BT 26.250 87.532 Td /F1 9.8 Tf [(Surveillance, Tracking, and Research Network \(MD STARnet\). J Pediatr. 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No improvement in delay in diagnosis of Duchenne muscular dystrophy [letter]. Lancet. Vol 345. )] TJ ET BT 26.250 736.167 Td /F1 9.8 Tf [(1995/03/04 ed1995:590-591.)] TJ ET BT 26.250 716.762 Td /F1 9.8 Tf [(8.)] TJ ET BT 38.132 716.762 Td /F1 9.8 Tf [(Scheuerbrandt G, Lundin A, Lovgren T, Mortier W. Screening for Duchenne muscular dystrophy: an improved screening test )] TJ ET BT 26.250 704.857 Td /F1 9.8 Tf [(for creatine kinase and its application in an infant screening program. Muscle Nerve. Jan 1986;9:11-23.)] TJ ET BT 26.250 685.452 Td /F1 9.8 Tf [(9.)] TJ ET BT 38.132 685.452 Td /F1 9.8 Tf [(van Ommen GJ, Scheuerbrandt G. Neonatal screening for muscular dystrophy. Consensus recommendation of the 14th )] TJ ET BT 26.250 673.548 Td /F1 9.8 Tf [(workshop sponsored by the European Neuromuscular Center \(ENMC\). Neuromuscul Disord. May 1993;3:231-239.)] TJ ET BT 26.250 654.143 Td /F1 9.8 Tf [(10.)] TJ ET BT 43.553 654.143 Td /F1 9.8 Tf [(Zellweger H, Antonik A. Newborn screening for Duchenne muscular dystrophy. Pediatrics. Jan 1975;55:30-34.)] TJ ET BT 26.250 634.738 Td /F1 9.8 Tf [(11.)] TJ ET BT 43.553 634.738 Td /F1 9.8 Tf [(Drummond LM. Creatine phosphokinase levels in the newborn and their use in screening for Duchenne muscular dystrophy. )] TJ ET BT 26.250 622.833 Td /F1 9.8 Tf [(Arch Dis Child. May 1979;54\(5\):362-366.)] TJ ET BT 26.250 603.429 Td /F1 9.8 Tf [(12.)] TJ ET BT 43.553 603.429 Td /F1 9.8 Tf [(Plauchu H, Cordier MP, Carrier HN, et al. Systematic neonatal detection of Duchenne's muscular dystrophy. Results after )] TJ ET BT 26.250 591.524 Td /F1 9.8 Tf [(10 years' of experience in Lyons \(France\). J Genet Hum. Aug 1987;35\(4\):217-230.)] TJ ET BT 26.250 572.119 Td /F1 9.8 Tf [(13.)] TJ ET BT 43.553 572.119 Td /F1 9.8 Tf [(Skinner R, Emery AE, Scheuerbrandt G, Syme J. Feasibility of neonatal screening for Duchenne muscular dystrophy. J Med )] TJ ET BT 26.250 560.214 Td /F1 9.8 Tf [(Genet. Feb 1982;19\(1\):1-3.)] TJ ET BT 26.250 540.810 Td /F1 9.8 Tf [(14.)] TJ ET BT 43.553 540.810 Td /F1 9.8 Tf [(Eyskens F, Philips E. Newborn screening for Duchenne muscular dystrophy. The experience in the province of Antwerp. )] TJ ET BT 26.250 528.905 Td /F1 9.8 Tf [(Neuromuscular Disorders. 2006;16:721.)] TJ ET BT 26.250 509.500 Td /F1 9.8 Tf [(15.)] TJ ET BT 43.553 509.500 Td /F1 9.8 Tf [(Greenberg CR, Jacobs HK, Halliday W, Wrogemann K. Three years' experience with neonatal screening for )] TJ ET BT 26.250 497.595 Td /F1 9.8 Tf [(Duchenne/Becker muscular dystrophy: gene analysis, gene expression, and phenotype prediction. Am J Med Genet. Apr 1 )] TJ ET BT 26.250 485.691 Td /F1 9.8 Tf [(1991;39\(1\):68-75.)] TJ ET BT 26.250 466.286 Td /F1 9.8 Tf [(16.)] TJ ET BT 43.553 466.286 Td /F1 9.8 Tf [(Naylor E, Hoffman E, Paulus-Thomas J, et al. Neonatal screening for Duchenne/Becker muscular dystrophy: )] TJ ET BT 26.250 454.381 Td /F1 9.8 Tf [(reconsideration based on molecular diagnosis and potential therapeutics. Screening. 1992;1:99-113.)] TJ ET BT 26.250 434.976 Td /F1 9.8 Tf [(17.)] TJ ET BT 43.553 434.976 Td /F1 9.8 Tf [(Wilson JM, Jungner YG. Principles and practice of screening for disease. Public Health Papers. no. 34. Geneva: World )] TJ ET BT 26.250 423.072 Td /F1 9.8 Tf [(Health Organization. 1968:163p.)] TJ ET BT 26.250 403.667 Td /F1 9.8 Tf [(18.)] TJ ET BT 43.553 403.667 Td /F1 9.8 Tf [(Bushby K, Finkel R, Birnkrant DJ, et al. Diagnosis and management of Duchenne muscular dystrophy, part 1: diagnosis, )] TJ ET BT 26.250 391.762 Td /F1 9.8 Tf [(and pharmacological and psychosocial management. Lancet Neurol. Jan 2010;9:77-93.)] TJ ET BT 26.250 372.357 Td /F1 9.8 Tf [(19.)] TJ ET BT 43.553 372.357 Td /F1 9.8 Tf [(Bushby K, Finkel R, Birnkrant DJ, et al. Diagnosis and management of Duchenne muscular dystrophy, part 2: )] TJ ET BT 26.250 360.453 Td /F1 9.8 Tf [(implementation of multidisciplinary care. Lancet Neurol. Feb 2010;9:177-189.)] TJ ET BT 26.250 341.048 Td /F1 9.8 Tf [(20.)] TJ ET BT 43.553 341.048 Td /F1 9.8 Tf [(Moxley RT, Ashwal S, Pandya S, et al. Practice parameter: corticosteroid treatment of Duchenne dystrophy: report of the )] TJ ET BT 26.250 329.143 Td /F1 9.8 Tf [(Quality Standards Subcommittee of the American Academy of Neurology and the Practice Committee of the Child Neurology )] TJ ET BT 26.250 317.238 Td /F1 9.8 Tf [(Society. Neurology. Jan 11 2005;64:13-20.)] TJ ET BT 26.250 297.834 Td /F1 9.8 Tf [(21.)] TJ ET BT 43.553 297.834 Td /F1 9.8 Tf [(American Academy of Pediatrics Section on Cardiology and Cardiac Surgery. Cardiovascular health supervision for )] TJ ET BT 26.250 285.929 Td /F1 9.8 Tf [(individuals affected by Duchenne or Becker muscular dystrophy. Pediatrics. Dec 2005;116:1569-1573.)] TJ ET BT 26.250 266.524 Td /F1 9.8 Tf [(22.)] TJ ET BT 43.553 266.524 Td /F1 9.8 Tf [(Finder JD, Birnkrant D, Carl J, et al. Respiratory care of the patient with Duchenne muscular dystrophy: ATS consensus )] TJ ET BT 26.250 254.619 Td /F1 9.8 Tf [(statement. Am J Respir Crit Care Med. Aug 15 2004;170\(4\):456-465.)] TJ ET BT 26.250 235.215 Td /F1 9.8 Tf [(23.)] TJ ET BT 43.553 235.215 Td /F1 9.8 Tf [(Ross LF. Screening for conditions that do not meet the Wilson and Jungner criteria: the case of Duchenne muscular )] TJ ET BT 26.250 223.310 Td /F1 9.8 Tf [(dystrophy. Am J Med Genet A. Apr 15 2006;140:914-922.)] TJ ET BT 26.250 203.905 Td /F1 9.8 Tf [(24.)] TJ ET BT 43.553 203.905 Td /F1 9.8 Tf [(American Society of Human Genetics \(ASHG\) American College of Medical Genetics \(ACMG\). Points to consider: ethical, )] TJ ET BT 26.250 192.000 Td /F1 9.8 Tf [(legal, and psychosocial implications of genetic testing in children and adolescents. Am J Hum Genet. Nov 1995;57:1233-1241.)] TJ ET BT 26.250 172.596 Td /F1 9.8 Tf [(25.)] TJ ET BT 43.553 172.596 Td /F1 9.8 Tf [(Hewlett J, Waisbren SE. A review of the psychosocial effects of false-positive results on parents and current communication )] TJ ET BT 26.250 160.691 Td /F1 9.8 Tf [(practices in newborn screening. J Inherit Metab Dis. Oct 2006;29:677-682.)] TJ ET BT 26.250 141.286 Td /F1 9.8 Tf [(26.)] TJ ET BT 43.553 141.286 Td /F1 9.8 Tf [(Fuentes-Afflick E, Hessol NA. Interpregnancy interval and the risk of premature infants. Obstet Gynecol. Mar 2000;95:383-)] TJ ET BT 26.250 129.381 Td /F1 9.8 Tf [(390.)] TJ ET BT 26.250 109.977 Td /F1 9.8 Tf [(27.)] TJ ET BT 43.553 109.977 Td /F1 9.8 Tf [(Mendell JR, Shilling C, Leslie ND, et al. Evidence-based path to newborn screening for duchenne muscular dystrophy. )] TJ ET BT 26.250 98.072 Td /F1 9.8 Tf [(Annals of neurology. Mar 2012;71\(3\):304-313.)] TJ ET BT 26.250 78.667 Td /F1 9.8 Tf [(28.)] TJ ET BT 43.553 78.667 Td /F1 9.8 Tf [(Orfanos AP, Naylor EW. A rapid screening test for Duchenne muscular dystrophy using dried blood specimens. Clin Chim )] TJ ET BT 26.250 66.762 Td /F1 9.8 Tf [(Acta. Apr 27 1984;138:267-274.)] TJ ET BT 26.250 47.358 Td /F1 9.8 Tf [(29.)] TJ ET BT 43.553 47.358 Td /F1 9.8 Tf [(American Academy of Pediatrics Committee on Nutrition. Iron fortification of infant formulas. Pediatrics. Jul 1999;104:119-)] TJ ET Q q 15.000 33.072 577.500 743.928 re W n 0.271 0.267 0.267 rg BT 26.250 767.476 Td /F1 9.8 Tf [(2000;4:219-223.)] TJ ET BT 26.250 748.071 Td /F1 9.8 Tf [(7.)] TJ ET BT 38.132 748.071 Td /F1 9.8 Tf [(Marshall PD, Galasko CS. No improvement in delay in diagnosis of Duchenne muscular dystrophy [letter]. Lancet. Vol 345. )] TJ ET BT 26.250 736.167 Td /F1 9.8 Tf [(1995/03/04 ed1995:590-591.)] TJ ET BT 26.250 716.762 Td /F1 9.8 Tf [(8.)] TJ ET BT 38.132 716.762 Td /F1 9.8 Tf [(Scheuerbrandt G, Lundin A, Lovgren T, Mortier W. Screening for Duchenne muscular dystrophy: an improved screening test )] TJ ET BT 26.250 704.857 Td /F1 9.8 Tf [(for creatine kinase and its application in an infant screening program. Muscle Nerve. Jan 1986;9:11-23.)] TJ ET BT 26.250 685.452 Td /F1 9.8 Tf [(9.)] TJ ET BT 38.132 685.452 Td /F1 9.8 Tf [(van Ommen GJ, Scheuerbrandt G. Neonatal screening for muscular dystrophy. Consensus recommendation of the 14th )] TJ ET BT 26.250 673.548 Td /F1 9.8 Tf [(workshop sponsored by the European Neuromuscular Center \(ENMC\). Neuromuscul Disord. May 1993;3:231-239.)] TJ ET BT 26.250 654.143 Td /F1 9.8 Tf [(10.)] TJ ET BT 43.553 654.143 Td /F1 9.8 Tf [(Zellweger H, Antonik A. Newborn screening for Duchenne muscular dystrophy. Pediatrics. Jan 1975;55:30-34.)] TJ ET BT 26.250 634.738 Td /F1 9.8 Tf [(11.)] TJ ET BT 43.553 634.738 Td /F1 9.8 Tf [(Drummond LM. Creatine phosphokinase levels in the newborn and their use in screening for Duchenne muscular dystrophy. )] TJ ET BT 26.250 622.833 Td /F1 9.8 Tf [(Arch Dis Child. May 1979;54\(5\):362-366.)] TJ ET BT 26.250 603.429 Td /F1 9.8 Tf [(12.)] TJ ET BT 43.553 603.429 Td /F1 9.8 Tf [(Plauchu H, Cordier MP, Carrier HN, et al. Systematic neonatal detection of Duchenne's muscular dystrophy. Results after )] TJ ET BT 26.250 591.524 Td /F1 9.8 Tf [(10 years' of experience in Lyons \(France\). J Genet Hum. Aug 1987;35\(4\):217-230.)] TJ ET BT 26.250 572.119 Td /F1 9.8 Tf [(13.)] TJ ET BT 43.553 572.119 Td /F1 9.8 Tf [(Skinner R, Emery AE, Scheuerbrandt G, Syme J. Feasibility of neonatal screening for Duchenne muscular dystrophy. J Med )] TJ ET BT 26.250 560.214 Td /F1 9.8 Tf [(Genet. Feb 1982;19\(1\):1-3.)] TJ ET BT 26.250 540.810 Td /F1 9.8 Tf [(14.)] TJ ET BT 43.553 540.810 Td /F1 9.8 Tf [(Eyskens F, Philips E. Newborn screening for Duchenne muscular dystrophy. The experience in the province of Antwerp. )] TJ ET BT 26.250 528.905 Td /F1 9.8 Tf [(Neuromuscular Disorders. 2006;16:721.)] TJ ET BT 26.250 509.500 Td /F1 9.8 Tf [(15.)] TJ ET BT 43.553 509.500 Td /F1 9.8 Tf [(Greenberg CR, Jacobs HK, Halliday W, Wrogemann K. Three years' experience with neonatal screening for )] TJ ET BT 26.250 497.595 Td /F1 9.8 Tf [(Duchenne/Becker muscular dystrophy: gene analysis, gene expression, and phenotype prediction. Am J Med Genet. Apr 1 )] TJ ET BT 26.250 485.691 Td /F1 9.8 Tf [(1991;39\(1\):68-75.)] TJ ET BT 26.250 466.286 Td /F1 9.8 Tf [(16.)] TJ ET BT 43.553 466.286 Td /F1 9.8 Tf [(Naylor E, Hoffman E, Paulus-Thomas J, et al. Neonatal screening for Duchenne/Becker muscular dystrophy: )] TJ ET BT 26.250 454.381 Td /F1 9.8 Tf [(reconsideration based on molecular diagnosis and potential therapeutics. Screening. 1992;1:99-113.)] TJ ET BT 26.250 434.976 Td /F1 9.8 Tf [(17.)] TJ ET BT 43.553 434.976 Td /F1 9.8 Tf [(Wilson JM, Jungner YG. Principles and practice of screening for disease. Public Health Papers. no. 34. Geneva: World )] TJ ET BT 26.250 423.072 Td /F1 9.8 Tf [(Health Organization. 1968:163p.)] TJ ET BT 26.250 403.667 Td /F1 9.8 Tf [(18.)] TJ ET BT 43.553 403.667 Td /F1 9.8 Tf [(Bushby K, Finkel R, Birnkrant DJ, et al. Diagnosis and management of Duchenne muscular dystrophy, part 1: diagnosis, )] TJ ET BT 26.250 391.762 Td /F1 9.8 Tf [(and pharmacological and psychosocial management. Lancet Neurol. Jan 2010;9:77-93.)] TJ ET BT 26.250 372.357 Td /F1 9.8 Tf [(19.)] TJ ET BT 43.553 372.357 Td /F1 9.8 Tf [(Bushby K, Finkel R, Birnkrant DJ, et al. Diagnosis and management of Duchenne muscular dystrophy, part 2: )] TJ ET BT 26.250 360.453 Td /F1 9.8 Tf [(implementation of multidisciplinary care. Lancet Neurol. Feb 2010;9:177-189.)] TJ ET BT 26.250 341.048 Td /F1 9.8 Tf [(20.)] TJ ET BT 43.553 341.048 Td /F1 9.8 Tf [(Moxley RT, Ashwal S, Pandya S, et al. Practice parameter: corticosteroid treatment of Duchenne dystrophy: report of the )] TJ ET BT 26.250 329.143 Td /F1 9.8 Tf [(Quality Standards Subcommittee of the American Academy of Neurology and the Practice Committee of the Child Neurology )] TJ ET BT 26.250 317.238 Td /F1 9.8 Tf [(Society. Neurology. Jan 11 2005;64:13-20.)] TJ ET BT 26.250 297.834 Td /F1 9.8 Tf [(21.)] TJ ET BT 43.553 297.834 Td /F1 9.8 Tf [(American Academy of Pediatrics Section on Cardiology and Cardiac Surgery. Cardiovascular health supervision for )] TJ ET BT 26.250 285.929 Td /F1 9.8 Tf [(individuals affected by Duchenne or Becker muscular dystrophy. Pediatrics. Dec 2005;116:1569-1573.)] TJ ET BT 26.250 266.524 Td /F1 9.8 Tf [(22.)] TJ ET BT 43.553 266.524 Td /F1 9.8 Tf [(Finder JD, Birnkrant D, Carl J, et al. Respiratory care of the patient with Duchenne muscular dystrophy: ATS consensus )] TJ ET BT 26.250 254.619 Td /F1 9.8 Tf [(statement. Am J Respir Crit Care Med. Aug 15 2004;170\(4\):456-465.)] TJ ET BT 26.250 235.215 Td /F1 9.8 Tf [(23.)] TJ ET BT 43.553 235.215 Td /F1 9.8 Tf [(Ross LF. Screening for conditions that do not meet the Wilson and Jungner criteria: the case of Duchenne muscular )] TJ ET BT 26.250 223.310 Td /F1 9.8 Tf [(dystrophy. Am J Med Genet A. Apr 15 2006;140:914-922.)] TJ ET BT 26.250 203.905 Td /F1 9.8 Tf [(24.)] TJ ET BT 43.553 203.905 Td /F1 9.8 Tf [(American Society of Human Genetics \(ASHG\) American College of Medical Genetics \(ACMG\). Points to consider: ethical, )] TJ ET BT 26.250 192.000 Td /F1 9.8 Tf [(legal, and psychosocial implications of genetic testing in children and adolescents. Am J Hum Genet. Nov 1995;57:1233-1241.)] TJ ET BT 26.250 172.596 Td /F1 9.8 Tf [(25.)] TJ ET BT 43.553 172.596 Td /F1 9.8 Tf [(Hewlett J, Waisbren SE. A review of the psychosocial effects of false-positive results on parents and current communication )] TJ ET BT 26.250 160.691 Td /F1 9.8 Tf [(practices in newborn screening. J Inherit Metab Dis. Oct 2006;29:677-682.)] TJ ET BT 26.250 141.286 Td /F1 9.8 Tf [(26.)] TJ ET BT 43.553 141.286 Td /F1 9.8 Tf [(Fuentes-Afflick E, Hessol NA. Interpregnancy interval and the risk of premature infants. Obstet Gynecol. Mar 2000;95:383-)] TJ ET BT 26.250 129.381 Td /F1 9.8 Tf [(390.)] TJ ET BT 26.250 109.977 Td /F1 9.8 Tf [(27.)] TJ ET BT 43.553 109.977 Td /F1 9.8 Tf [(Mendell JR, Shilling C, Leslie ND, et al. Evidence-based path to newborn screening for duchenne muscular dystrophy. )] TJ ET BT 26.250 98.072 Td /F1 9.8 Tf [(Annals of neurology. Mar 2012;71\(3\):304-313.)] TJ ET BT 26.250 78.667 Td /F1 9.8 Tf [(28.)] TJ ET BT 43.553 78.667 Td /F1 9.8 Tf [(Orfanos AP, Naylor EW. A rapid screening test for Duchenne muscular dystrophy using dried blood specimens. Clin Chim )] TJ ET BT 26.250 66.762 Td /F1 9.8 Tf [(Acta. Apr 27 1984;138:267-274.)] TJ ET BT 26.250 47.358 Td /F1 9.8 Tf [(29.)] TJ ET BT 43.553 47.358 Td /F1 9.8 Tf [(American Academy of Pediatrics Committee on Nutrition. Iron fortification of infant formulas. Pediatrics. Jul 1999;104:119-)] TJ ET Q q 15.000 33.072 577.500 743.928 re W n 0.271 0.267 0.267 rg BT 26.250 767.476 Td /F1 9.8 Tf [(2000;4:219-223.)] TJ ET BT 26.250 748.071 Td /F1 9.8 Tf [(7.)] TJ ET BT 38.132 748.071 Td /F1 9.8 Tf [(Marshall PD, Galasko CS. No improvement in delay in diagnosis of Duchenne muscular dystrophy [letter]. Lancet. Vol 345. )] TJ ET BT 26.250 736.167 Td /F1 9.8 Tf [(1995/03/04 ed1995:590-591.)] TJ ET BT 26.250 716.762 Td /F1 9.8 Tf [(8.)] TJ ET BT 38.132 716.762 Td /F1 9.8 Tf [(Scheuerbrandt G, Lundin A, Lovgren T, Mortier W. Screening for Duchenne muscular dystrophy: an improved screening test )] TJ ET BT 26.250 704.857 Td /F1 9.8 Tf [(for creatine kinase and its application in an infant screening program. Muscle Nerve. Jan 1986;9:11-23.)] TJ ET BT 26.250 685.452 Td /F1 9.8 Tf [(9.)] TJ ET BT 38.132 685.452 Td /F1 9.8 Tf [(van Ommen GJ, Scheuerbrandt G. Neonatal screening for muscular dystrophy. Consensus recommendation of the 14th )] TJ ET BT 26.250 673.548 Td /F1 9.8 Tf [(workshop sponsored by the European Neuromuscular Center \(ENMC\). Neuromuscul Disord. May 1993;3:231-239.)] TJ ET BT 26.250 654.143 Td /F1 9.8 Tf [(10.)] TJ ET BT 43.553 654.143 Td /F1 9.8 Tf [(Zellweger H, Antonik A. Newborn screening for Duchenne muscular dystrophy. Pediatrics. Jan 1975;55:30-34.)] TJ ET BT 26.250 634.738 Td /F1 9.8 Tf [(11.)] TJ ET BT 43.553 634.738 Td /F1 9.8 Tf [(Drummond LM. Creatine phosphokinase levels in the newborn and their use in screening for Duchenne muscular dystrophy. )] TJ ET BT 26.250 622.833 Td /F1 9.8 Tf [(Arch Dis Child. May 1979;54\(5\):362-366.)] TJ ET BT 26.250 603.429 Td /F1 9.8 Tf [(12.)] TJ ET BT 43.553 603.429 Td /F1 9.8 Tf [(Plauchu H, Cordier MP, Carrier HN, et al. Systematic neonatal detection of Duchenne's muscular dystrophy. Results after )] TJ ET BT 26.250 591.524 Td /F1 9.8 Tf [(10 years' of experience in Lyons \(France\). J Genet Hum. Aug 1987;35\(4\):217-230.)] TJ ET BT 26.250 572.119 Td /F1 9.8 Tf [(13.)] TJ ET BT 43.553 572.119 Td /F1 9.8 Tf [(Skinner R, Emery AE, Scheuerbrandt G, Syme J. Feasibility of neonatal screening for Duchenne muscular dystrophy. J Med )] TJ ET BT 26.250 560.214 Td /F1 9.8 Tf [(Genet. Feb 1982;19\(1\):1-3.)] TJ ET BT 26.250 540.810 Td /F1 9.8 Tf [(14.)] TJ ET BT 43.553 540.810 Td /F1 9.8 Tf [(Eyskens F, Philips E. Newborn screening for Duchenne muscular dystrophy. The experience in the province of Antwerp. )] TJ ET BT 26.250 528.905 Td /F1 9.8 Tf [(Neuromuscular Disorders. 2006;16:721.)] TJ ET BT 26.250 509.500 Td /F1 9.8 Tf [(15.)] TJ ET BT 43.553 509.500 Td /F1 9.8 Tf [(Greenberg CR, Jacobs HK, Halliday W, Wrogemann K. Three years' experience with neonatal screening for )] TJ ET BT 26.250 497.595 Td /F1 9.8 Tf [(Duchenne/Becker muscular dystrophy: gene analysis, gene expression, and phenotype prediction. Am J Med Genet. Apr 1 )] TJ ET BT 26.250 485.691 Td /F1 9.8 Tf [(1991;39\(1\):68-75.)] TJ ET BT 26.250 466.286 Td /F1 9.8 Tf [(16.)] TJ ET BT 43.553 466.286 Td /F1 9.8 Tf [(Naylor E, Hoffman E, Paulus-Thomas J, et al. Neonatal screening for Duchenne/Becker muscular dystrophy: )] TJ ET BT 26.250 454.381 Td /F1 9.8 Tf [(reconsideration based on molecular diagnosis and potential therapeutics. Screening. 1992;1:99-113.)] TJ ET BT 26.250 434.976 Td /F1 9.8 Tf [(17.)] TJ ET BT 43.553 434.976 Td /F1 9.8 Tf [(Wilson JM, Jungner YG. Principles and practice of screening for disease. Public Health Papers. no. 34. Geneva: World )] TJ ET BT 26.250 423.072 Td /F1 9.8 Tf [(Health Organization. 1968:163p.)] TJ ET BT 26.250 403.667 Td /F1 9.8 Tf [(18.)] TJ ET BT 43.553 403.667 Td /F1 9.8 Tf [(Bushby K, Finkel R, Birnkrant DJ, et al. Diagnosis and management of Duchenne muscular dystrophy, part 1: diagnosis, )] TJ ET BT 26.250 391.762 Td /F1 9.8 Tf [(and pharmacological and psychosocial management. Lancet Neurol. Jan 2010;9:77-93.)] TJ ET BT 26.250 372.357 Td /F1 9.8 Tf [(19.)] TJ ET BT 43.553 372.357 Td /F1 9.8 Tf [(Bushby K, Finkel R, Birnkrant DJ, et al. Diagnosis and management of Duchenne muscular dystrophy, part 2: )] TJ ET BT 26.250 360.453 Td /F1 9.8 Tf [(implementation of multidisciplinary care. Lancet Neurol. Feb 2010;9:177-189.)] TJ ET BT 26.250 341.048 Td /F1 9.8 Tf [(20.)] TJ ET BT 43.553 341.048 Td /F1 9.8 Tf [(Moxley RT, Ashwal S, Pandya S, et al. Practice parameter: corticosteroid treatment of Duchenne dystrophy: report of the )] TJ ET BT 26.250 329.143 Td /F1 9.8 Tf [(Quality Standards Subcommittee of the American Academy of Neurology and the Practice Committee of the Child Neurology )] TJ ET BT 26.250 317.238 Td /F1 9.8 Tf [(Society. Neurology. Jan 11 2005;64:13-20.)] TJ ET BT 26.250 297.834 Td /F1 9.8 Tf [(21.)] TJ ET BT 43.553 297.834 Td /F1 9.8 Tf [(American Academy of Pediatrics Section on Cardiology and Cardiac Surgery. Cardiovascular health supervision for )] TJ ET BT 26.250 285.929 Td /F1 9.8 Tf [(individuals affected by Duchenne or Becker muscular dystrophy. Pediatrics. Dec 2005;116:1569-1573.)] TJ ET BT 26.250 266.524 Td /F1 9.8 Tf [(22.)] TJ ET BT 43.553 266.524 Td /F1 9.8 Tf [(Finder JD, Birnkrant D, Carl J, et al. Respiratory care of the patient with Duchenne muscular dystrophy: ATS consensus )] TJ ET BT 26.250 254.619 Td /F1 9.8 Tf [(statement. Am J Respir Crit Care Med. Aug 15 2004;170\(4\):456-465.)] TJ ET BT 26.250 235.215 Td /F1 9.8 Tf [(23.)] TJ ET BT 43.553 235.215 Td /F1 9.8 Tf [(Ross LF. Screening for conditions that do not meet the Wilson and Jungner criteria: the case of Duchenne muscular )] TJ ET BT 26.250 223.310 Td /F1 9.8 Tf [(dystrophy. Am J Med Genet A. Apr 15 2006;140:914-922.)] TJ ET BT 26.250 203.905 Td /F1 9.8 Tf [(24.)] TJ ET BT 43.553 203.905 Td /F1 9.8 Tf [(American Society of Human Genetics \(ASHG\) American College of Medical Genetics \(ACMG\). Points to consider: ethical, )] TJ ET BT 26.250 192.000 Td /F1 9.8 Tf [(legal, and psychosocial implications of genetic testing in children and adolescents. Am J Hum Genet. Nov 1995;57:1233-1241.)] TJ ET BT 26.250 172.596 Td /F1 9.8 Tf [(25.)] TJ ET BT 43.553 172.596 Td /F1 9.8 Tf [(Hewlett J, Waisbren SE. A review of the psychosocial effects of false-positive results on parents and current communication )] TJ ET BT 26.250 160.691 Td /F1 9.8 Tf [(practices in newborn screening. J Inherit Metab Dis. Oct 2006;29:677-682.)] TJ ET BT 26.250 141.286 Td /F1 9.8 Tf [(26.)] TJ ET BT 43.553 141.286 Td /F1 9.8 Tf [(Fuentes-Afflick E, Hessol NA. Interpregnancy interval and the risk of premature infants. Obstet Gynecol. Mar 2000;95:383-)] TJ ET BT 26.250 129.381 Td /F1 9.8 Tf [(390.)] TJ ET BT 26.250 109.977 Td /F1 9.8 Tf [(27.)] TJ ET BT 43.553 109.977 Td /F1 9.8 Tf [(Mendell JR, Shilling C, Leslie ND, et al. Evidence-based path to newborn screening for duchenne muscular dystrophy. )] TJ ET BT 26.250 98.072 Td /F1 9.8 Tf [(Annals of neurology. Mar 2012;71\(3\):304-313.)] TJ ET BT 26.250 78.667 Td /F1 9.8 Tf [(28.)] TJ ET BT 43.553 78.667 Td /F1 9.8 Tf [(Orfanos AP, Naylor EW. A rapid screening test for Duchenne muscular dystrophy using dried blood specimens. Clin Chim )] TJ ET BT 26.250 66.762 Td /F1 9.8 Tf [(Acta. Apr 27 1984;138:267-274.)] TJ ET BT 26.250 47.358 Td /F1 9.8 Tf [(29.)] TJ ET BT 43.553 47.358 Td /F1 9.8 Tf [(American Academy of Pediatrics Committee on Nutrition. Iron fortification of infant formulas. Pediatrics. Jul 1999;104:119-)] TJ ET Q q 0.000 0.000 0.000 rg BT 291.710 19.825 Td /F1 11.0 Tf [(12)] TJ ET BT 25.000 19.825 Td /F1 11.0 Tf [(PLOS Currents Muscular Dystrophy)] TJ ET Q endstream endobj 509 0 obj << /Type /Page /Parent 3 0 R /Contents 510 0 R >> endobj 510 0 obj << /Length 6611 >> stream 0.271 0.267 0.267 rg q 15.000 542.833 577.500 234.167 re W n 0.271 0.267 0.267 rg BT 26.250 767.476 Td /F1 9.8 Tf [(123.)] TJ ET BT 26.250 748.071 Td /F1 9.8 Tf [(30.)] TJ ET BT 43.553 748.071 Td /F1 9.8 Tf [(Statistical Package for the Social Sciences \(SPSS\) [computer program]. Version 15.0. Chicago, IL: SPSS, Inc.; 2006.)] TJ ET BT 26.250 728.667 Td /F1 9.8 Tf [(31.)] TJ ET BT 43.553 728.667 Td /F1 9.8 Tf [(Blum D, Brauman J. Serum enzymes in the neonatal period. Diagnostic aid in muscle pathology. Biol Neonate. 1975;26\(1-)] TJ ET BT 26.250 716.762 Td /F1 9.8 Tf [(2\):53-57.)] TJ ET BT 26.250 697.357 Td /F1 9.8 Tf [(32.)] TJ ET BT 43.553 697.357 Td /F1 9.8 Tf [(Bailey DB, Jr., Beskow LM, Davis AM, Skinner D. Changing perspectives on the benefits of newborn screening. Ment )] TJ ET BT 26.250 685.452 Td /F1 9.8 Tf [(Retard Dev Disabil Res Rev. 2006;12:270-279.)] TJ ET BT 26.250 666.048 Td /F1 9.8 Tf [(33.)] TJ ET BT 43.553 666.048 Td /F1 9.8 Tf [(Grosse SD, Boyle CA, Kenneson A, Khoury MJ, Wilfond BS. From public health emergency to public health service: the )] TJ ET BT 26.250 654.143 Td /F1 9.8 Tf [(implications of evolving criteria for newborn screening panels. Pediatrics. Mar 2006;117:923-929.)] TJ ET BT 26.250 634.738 Td /F1 9.8 Tf [(34.)] TJ ET BT 43.553 634.738 Td /F1 9.8 Tf [(American College of Medical Genetics Newborn Screening Expert Group. Newborn screening: toward a uniform screening )] TJ ET BT 26.250 622.833 Td /F1 9.8 Tf [(panel and system--executive summary. Pediatrics. May 2006;117:S296-307.)] TJ ET BT 26.250 603.429 Td /F1 9.8 Tf [(35.)] TJ ET BT 43.553 603.429 Td /F1 9.8 Tf [(Calonge N, Green NS, Rinaldo P, et al. Committee report: Method for evaluating conditions nominated for population-based )] TJ ET BT 26.250 591.524 Td /F1 9.8 Tf [(screening of newborns and children. Genet Med. Mar 2010;12\(3\):153-159.)] TJ ET BT 26.250 572.119 Td /F1 9.8 Tf [(36.)] TJ ET BT 43.553 572.119 Td /F1 9.8 Tf [(Kemper AR, Bailey DB, Jr. Pediatricians' knowledge of and attitudes toward fragile X syndrome screening. Acad Pediatr. )] TJ ET BT 26.250 560.214 Td /F1 9.8 Tf [(Mar-Apr 2009;9:114-117.)] TJ ET Q q 15.000 542.833 577.500 234.167 re W n 0.271 0.267 0.267 rg BT 26.250 767.476 Td /F1 9.8 Tf [(123.)] TJ ET BT 26.250 748.071 Td /F1 9.8 Tf [(30.)] TJ ET BT 43.553 748.071 Td /F1 9.8 Tf [(Statistical Package for the Social Sciences \(SPSS\) [computer program]. Version 15.0. Chicago, IL: SPSS, Inc.; 2006.)] TJ ET BT 26.250 728.667 Td /F1 9.8 Tf [(31.)] TJ ET BT 43.553 728.667 Td /F1 9.8 Tf [(Blum D, Brauman J. Serum enzymes in the neonatal period. Diagnostic aid in muscle pathology. Biol Neonate. 1975;26\(1-)] TJ ET BT 26.250 716.762 Td /F1 9.8 Tf [(2\):53-57.)] TJ ET BT 26.250 697.357 Td /F1 9.8 Tf [(32.)] TJ ET BT 43.553 697.357 Td /F1 9.8 Tf [(Bailey DB, Jr., Beskow LM, Davis AM, Skinner D. Changing perspectives on the benefits of newborn screening. Ment )] TJ ET BT 26.250 685.452 Td /F1 9.8 Tf [(Retard Dev Disabil Res Rev. 2006;12:270-279.)] TJ ET BT 26.250 666.048 Td /F1 9.8 Tf [(33.)] TJ ET BT 43.553 666.048 Td /F1 9.8 Tf [(Grosse SD, Boyle CA, Kenneson A, Khoury MJ, Wilfond BS. From public health emergency to public health service: the )] TJ ET BT 26.250 654.143 Td /F1 9.8 Tf [(implications of evolving criteria for newborn screening panels. Pediatrics. 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Acad Pediatr. )] TJ ET BT 26.250 560.214 Td /F1 9.8 Tf [(Mar-Apr 2009;9:114-117.)] TJ ET Q q 15.000 542.833 577.500 234.167 re W n 0.271 0.267 0.267 rg BT 26.250 767.476 Td /F1 9.8 Tf [(123.)] TJ ET BT 26.250 748.071 Td /F1 9.8 Tf [(30.)] TJ ET BT 43.553 748.071 Td /F1 9.8 Tf [(Statistical Package for the Social Sciences \(SPSS\) [computer program]. Version 15.0. Chicago, IL: SPSS, Inc.; 2006.)] TJ ET BT 26.250 728.667 Td /F1 9.8 Tf [(31.)] TJ ET BT 43.553 728.667 Td /F1 9.8 Tf [(Blum D, Brauman J. Serum enzymes in the neonatal period. Diagnostic aid in muscle pathology. Biol Neonate. 1975;26\(1-)] TJ ET BT 26.250 716.762 Td /F1 9.8 Tf [(2\):53-57.)] TJ ET BT 26.250 697.357 Td /F1 9.8 Tf [(32.)] TJ ET BT 43.553 697.357 Td /F1 9.8 Tf [(Bailey DB, Jr., Beskow LM, Davis AM, Skinner D. Changing perspectives on the benefits of newborn screening. Ment )] TJ ET BT 26.250 685.452 Td /F1 9.8 Tf [(Retard Dev Disabil Res Rev. 2006;12:270-279.)] TJ ET BT 26.250 666.048 Td /F1 9.8 Tf [(33.)] TJ ET BT 43.553 666.048 Td /F1 9.8 Tf [(Grosse SD, Boyle CA, Kenneson A, Khoury MJ, Wilfond BS. From public health emergency to public health service: the )] TJ ET BT 26.250 654.143 Td /F1 9.8 Tf [(implications of evolving criteria for newborn screening panels. Pediatrics. Mar 2006;117:923-929.)] TJ ET BT 26.250 634.738 Td /F1 9.8 Tf [(34.)] TJ ET BT 43.553 634.738 Td /F1 9.8 Tf [(American College of Medical Genetics Newborn Screening Expert Group. Newborn screening: toward a uniform screening )] TJ ET BT 26.250 622.833 Td /F1 9.8 Tf [(panel and system--executive summary. Pediatrics. May 2006;117:S296-307.)] TJ ET BT 26.250 603.429 Td /F1 9.8 Tf [(35.)] TJ ET BT 43.553 603.429 Td /F1 9.8 Tf [(Calonge N, Green NS, Rinaldo P, et al. 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