%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 164 0 R 191 0 R 205 0 R 237 0 R 239 0 R 241 0 R 243 0 R ] /Count 8 /Resources << /ProcSet 4 0 R /Font << /F1 8 0 R /F2 9 0 R /F3 10 0 R /F4 11 0 R /F5 166 0 R >> /XObject << /I1 12 0 R /I2 13 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:20170830032646+00'00') /ModDate (D:20170830032646+00'00') /Title (Self Reports of Day-to-Day Function in a Small Cohort of People with Prodromal and Early HD PLOS Currents Huntington Disease) >> 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 ] /Contents 7 0 R >> endobj 7 0 obj << /Length 31748 >> 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 [(Self Reports of Day-to-Day Function in a Small Cohort of )] TJ ET BT 15.000 693.094 Td /F2 21.0 Tf [(People with Prodromal and Early HD)] TJ ET Q 0.271 0.267 0.267 rg BT 15.000 675.088 Td /F3 9.8 Tf [(August 11, 2011)] TJ ET BT 83.523 675.088 Td /F3 9.8 Tf [()] TJ ET 0.267 0.267 0.267 rg BT 88.398 675.088 Td /F3 9.8 Tf [(Epidemiology)] TJ ET BT 26.250 663.247 Td /F1 9.8 Tf [(Janet Williams)] TJ ET 0.271 0.267 0.267 rg BT 89.089 663.247 Td /F1 9.8 Tf [(, )] TJ ET 0.267 0.267 0.267 rg BT 94.510 663.247 Td /F1 9.8 Tf [(Nancy Downing)] TJ ET 0.271 0.267 0.267 rg BT 162.779 663.247 Td /F1 9.8 Tf [(, )] TJ ET 0.267 0.267 0.267 rg BT 168.200 663.247 Td /F1 9.8 Tf [(Anthony L Vaccarino)] TJ ET 0.271 0.267 0.267 rg BT 258.163 663.247 Td /F1 9.8 Tf [(, )] TJ ET 0.267 0.267 0.267 rg BT 263.584 663.247 Td /F1 9.8 Tf [(Mark Guttman)] TJ ET 0.271 0.267 0.267 rg BT 325.351 663.247 Td /F1 9.8 Tf [(, )] TJ ET 0.267 0.267 0.267 rg BT 330.772 663.247 Td /F1 9.8 Tf [(Jane S. Paulsen)] TJ ET 0.271 0.267 0.267 rg BT 26.250 651.342 Td /F1 9.8 Tf [(Williams J, Downing N, Vaccarino AL, Guttman M, Paulsen JS. Self Reports of Day-to-Day Function in a Small Cohort of )] TJ ET BT 548.051 651.342 Td /F1 9.8 Tf [(People )] TJ ET BT 26.250 639.438 Td /F1 9.8 Tf [(with Prodromal and Early HD. PLOS Currents Huntington Disease. 2011 Aug 11 . Edition 1. doi: 10.1371/currents.RRN1254.)] TJ ET q 15.000 32.753 577.500 604.304 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 [(Day-to-day functioning is a component of health-related quality of life and is an important end point for therapies to treat )] TJ ET BT 26.250 578.476 Td /F1 9.8 Tf [(Huntington Disease \(HD\). Specific areas of day-to-day function changes have not been reported for prodromal or very early )] TJ ET BT 26.250 566.571 Td /F1 9.8 Tf [(stages of HD. An exploratory self-report telephone interview was conducted with sixteen people with prodromal HD or early HD )] TJ ET BT 26.250 554.667 Td /F1 9.8 Tf [(who met criteria designed to capture research participants most near to motor diagnosis. All completed semi-structured )] TJ ET BT 26.250 542.762 Td /F1 9.8 Tf [(interviews on function in nine aspects of day-to-day life. Out of 16, 14 reported changes in at least one area. All day-to-day )] TJ ET BT 26.250 530.857 Td /F1 9.8 Tf [(function areas were endorsed by at least one participant with driving being the most common area endorsed by 11/16. Changes )] TJ ET BT 26.250 518.952 Td /F1 9.8 Tf [(in ability to perform some day-to-day tasks are experienced by people who are close to the time of clinical diagnosis for HD. )] TJ ET BT 26.250 507.048 Td /F1 9.8 Tf [(Functional ability is likely to be an important component of outcome assessments of clinical trials and in ongoing clinical )] TJ ET BT 26.250 495.143 Td /F1 9.8 Tf [(management.)] TJ ET BT 26.250 458.540 Td /F4 12.0 Tf [(Introduction)] TJ ET BT 26.250 438.586 Td /F1 9.8 Tf [(Huntington disease \(HD\) is an autosomal dominant, progressive neurodegenerative disorder in which losses of neurologic )] TJ ET BT 26.250 426.681 Td /F1 9.8 Tf [(function continue until the end of the persons life. The diagnosis of HD traditionally is made with onset of motor symptoms. This )] TJ ET BT 26.250 414.777 Td /F1 9.8 Tf [(typically occurs in the fourth decade of life )] TJ ET 0.267 0.267 0.267 rg BT 209.959 414.777 Td /F1 9.8 Tf [([1])] TJ ET 0.271 0.267 0.267 rg BT 220.802 414.777 Td /F1 9.8 Tf [( , when individuals are employed and may be parenting minor age or young adult )] TJ ET BT 26.250 402.872 Td /F1 9.8 Tf [(children. Cognitive, motor, sensory, physiologic, and neuroimaging markers of the earliest phase of this condition have been )] TJ ET BT 26.250 390.967 Td /F1 9.8 Tf [(reported )] TJ ET 0.267 0.267 0.267 rg BT 65.269 390.967 Td /F1 9.8 Tf [([2])] TJ ET 0.271 0.267 0.267 rg BT 76.112 390.967 Td /F1 9.8 Tf [( , but clear descriptions of the effects of these changes on day-to-day function have not yet been possible due to )] TJ ET BT 26.250 379.062 Td /F1 9.8 Tf [(limited sensitivity of existing measures )] TJ ET 0.267 0.267 0.267 rg BT 194.213 379.062 Td /F1 9.8 Tf [([2] )] TJ ET 0.271 0.267 0.267 rg BT 207.766 379.062 Td /F1 9.8 Tf [(.)] TJ ET BT 26.250 359.658 Td /F1 9.8 Tf [(In plain language, function refers to a persons abilities to do their daily tasks and routines in their daily life. However, the )] TJ ET BT 26.250 347.753 Td /F1 9.8 Tf [(concept of ability to perform daily tasks is used in a variety of ways. The FDA description of patient-reported outcomes in clinical )] TJ ET BT 26.250 335.848 Td /F1 9.8 Tf [(trials includes measures of any aspect of a patients health status that document the effect of a disease on a persons quality of )] TJ ET BT 26.250 323.943 Td /F1 9.8 Tf [(life, which in turn may include the persons ability to perform daily activities \(FDA, 2006\). In the public health arena, health )] TJ ET BT 26.250 312.039 Td /F1 9.8 Tf [(related quality of life refers to the effect of chronic illness on a persons day-to-day life )] TJ ET 0.267 0.267 0.267 rg BT 396.916 312.039 Td /F1 9.8 Tf [([3])] TJ ET 0.271 0.267 0.267 rg BT 407.758 312.039 Td /F1 9.8 Tf [( . The notion of function status is a )] TJ ET BT 26.250 300.134 Td /F1 9.8 Tf [(component of a health-related quality of life model )] TJ ET 0.267 0.267 0.267 rg BT 244.650 300.134 Td /F1 9.8 Tf [([4])] TJ ET 0.271 0.267 0.267 rg BT 255.492 300.134 Td /F1 9.8 Tf [( , and it refers to the ability to perform tasks in multiple domains such as )] TJ ET BT 26.250 288.229 Td /F1 9.8 Tf [(ones physical, social role, and psychological function on a day-to-day basis )] TJ ET 0.267 0.267 0.267 rg BT 355.186 288.229 Td /F1 9.8 Tf [([5])] TJ ET 0.271 0.267 0.267 rg BT 366.028 288.229 Td /F1 9.8 Tf [( .)] TJ ET BT 26.250 268.824 Td /F1 9.8 Tf [(The earliest phase described in HD is referred to as the prodrome, and research findings have documented features of the )] TJ ET BT 26.250 256.920 Td /F1 9.8 Tf [(disease up to 15 years prior to the diagnosis )] TJ ET 0.267 0.267 0.267 rg BT 220.265 256.920 Td /F1 9.8 Tf [([2])] TJ ET 0.271 0.267 0.267 rg BT 231.107 256.920 Td /F1 9.8 Tf [( . Ongoing studies in the US and in Europe on prodromal HD \(PREDICT-HD and )] TJ ET BT 26.250 245.015 Td /F1 9.8 Tf [(TRACK-HD\) )] TJ ET 0.267 0.267 0.267 rg BT 82.576 245.015 Td /F1 9.8 Tf [([6] [7])] TJ ET 0.271 0.267 0.267 rg BT 106.970 245.015 Td /F1 9.8 Tf [( use a variety of measures of functional assessments, including the UHDRS TFC scale )] TJ ET 0.267 0.267 0.267 rg BT 483.564 245.015 Td /F1 9.8 Tf [([8])] TJ ET 0.271 0.267 0.267 rg BT 494.406 245.015 Td /F1 9.8 Tf [( , SF 36 )] TJ ET 0.267 0.267 0.267 rg BT 531.261 245.015 Td /F1 9.8 Tf [([9])] TJ ET 0.271 0.267 0.267 rg BT 542.103 245.015 Td /F1 9.8 Tf [( , and )] TJ ET BT 26.250 233.110 Td /F1 9.8 Tf [(Functional Assessment scale \(FAS\) )] TJ ET 0.267 0.267 0.267 rg BT 183.381 233.110 Td /F1 9.8 Tf [([10])] TJ ET 0.271 0.267 0.267 rg BT 199.644 233.110 Td /F1 9.8 Tf [( . However, these measures do not provide sufficient detail regarding specific functional )] TJ ET BT 26.250 221.205 Td /F1 9.8 Tf [(deficits, nor do they assess factors that may contribute to these changes. The UHDRS TFC scale )] TJ ET 0.267 0.267 0.267 rg BT 447.840 221.205 Td /F1 9.8 Tf [([8])] TJ ET 0.271 0.267 0.267 rg BT 458.682 221.205 Td /F1 9.8 Tf [( is used in TRACK-HD and )] TJ ET BT 26.250 209.301 Td /F1 9.8 Tf [(PREDICT-HD. In addition, TRACK-HD uses participant self reports on the SF 36 )] TJ ET 0.267 0.267 0.267 rg BT 375.739 209.301 Td /F1 9.8 Tf [([7])] TJ ET 0.271 0.267 0.267 rg BT 386.581 209.301 Td /F1 9.8 Tf [( . The SF 36 provides scales to measure )] TJ ET BT 26.250 197.396 Td /F1 9.8 Tf [(physical and social aspects of functioning )] TJ ET 0.267 0.267 0.267 rg BT 207.795 197.396 Td /F1 9.8 Tf [([9])] TJ ET 0.271 0.267 0.267 rg BT 218.637 197.396 Td /F1 9.8 Tf [( . The TFC includes ratings by the person with prodromal HD or with the persons )] TJ ET BT 26.250 185.491 Td /F1 9.8 Tf [(companion, of a persons self reported abilities to maintain their occupation, finances, domestic chores, activities of daily living, )] TJ ET BT 26.250 173.586 Td /F1 9.8 Tf [(and whether the person resides at home with or without support or in a full time skilled nursing facility. The FAS )] TJ ET 0.267 0.267 0.267 rg BT 507.988 173.586 Td /F1 9.8 Tf [([10])] TJ ET 0.271 0.267 0.267 rg BT 524.251 173.586 Td /F1 9.8 Tf [( is a )] TJ ET BT 26.250 161.682 Td /F1 9.8 Tf [(questionnaire of tasks related to occupation, finances, activities of daily living, domestic chores, level of care, and physical )] TJ ET BT 26.250 149.777 Td /F1 9.8 Tf [(abilities.)] TJ ET BT 26.250 130.372 Td /F1 9.8 Tf [(These global measures of functioning may not be sensitive to subtle changes in functional abilities that occur in prodromal HD. )] TJ ET BT 26.250 118.467 Td /F1 9.8 Tf [(For example, when administered to 786 participants in PREDICT-HD, over 88% of participants scored at ceiling on the TFC or )] TJ ET BT 26.250 106.563 Td /F1 9.8 Tf [(FAS. Among those participants, 5-7% reported some loss on questions about work and managing finances )] TJ ET 0.267 0.267 0.267 rg BT 489.053 106.563 Td /F1 9.8 Tf [([2])] TJ ET 0.271 0.267 0.267 rg BT 499.895 106.563 Td /F1 9.8 Tf [( . A separate )] TJ ET BT 26.250 94.658 Td /F1 9.8 Tf [(analysis of 265 people who were diagnosed as having HD during their prospective participation in Huntington Study Group )] TJ ET BT 26.250 82.753 Td /F1 9.8 Tf [(projects )] TJ ET 0.267 0.267 0.267 rg BT 63.095 82.753 Td /F1 9.8 Tf [([11])] TJ ET 0.271 0.267 0.267 rg BT 79.358 82.753 Td /F1 9.8 Tf [( identified that functional loss is strongly related to changes in motor scores; cognitive scores were also associated )] TJ ET BT 26.250 70.848 Td /F1 9.8 Tf [(with decreased function regarding managing finances, driving safely, supervising children, and being able to volunteer; )] TJ ET BT 26.250 58.944 Td /F1 9.8 Tf [(depression scores were related to loss of ability to engage in usual employment. Thus, measures to be used in upcoming )] TJ ET BT 26.250 47.039 Td /F1 9.8 Tf [(clinical trials and in clinical assessments of people with prodromal HD would be needed that are sensitive to day-to-day real-life )] 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 [(Self Reports of Day-to-Day Function in a Small Cohort of )] TJ ET BT 15.000 693.094 Td /F2 21.0 Tf [(People with Prodromal and Early HD)] TJ ET Q 0.271 0.267 0.267 rg BT 15.000 675.088 Td /F3 9.8 Tf [(August 11, 2011)] TJ ET BT 83.523 675.088 Td /F3 9.8 Tf [()] TJ ET 0.267 0.267 0.267 rg BT 88.398 675.088 Td /F3 9.8 Tf [(Epidemiology)] TJ ET BT 26.250 663.247 Td /F1 9.8 Tf [(Janet Williams)] TJ ET 0.271 0.267 0.267 rg BT 89.089 663.247 Td /F1 9.8 Tf [(, )] TJ ET 0.267 0.267 0.267 rg BT 94.510 663.247 Td /F1 9.8 Tf [(Nancy Downing)] TJ ET 0.271 0.267 0.267 rg BT 162.779 663.247 Td /F1 9.8 Tf [(, )] TJ ET 0.267 0.267 0.267 rg BT 168.200 663.247 Td /F1 9.8 Tf [(Anthony L Vaccarino)] TJ ET 0.271 0.267 0.267 rg BT 258.163 663.247 Td /F1 9.8 Tf [(, )] TJ ET 0.267 0.267 0.267 rg BT 263.584 663.247 Td /F1 9.8 Tf [(Mark Guttman)] TJ ET 0.271 0.267 0.267 rg BT 325.351 663.247 Td /F1 9.8 Tf [(, )] TJ ET 0.267 0.267 0.267 rg BT 330.772 663.247 Td /F1 9.8 Tf [(Jane S. Paulsen)] TJ ET 0.271 0.267 0.267 rg BT 26.250 651.342 Td /F1 9.8 Tf [(Williams J, Downing N, Vaccarino AL, Guttman M, Paulsen JS. Self Reports of Day-to-Day Function in a Small Cohort of )] TJ ET BT 548.051 651.342 Td /F1 9.8 Tf [(People )] TJ ET BT 26.250 639.438 Td /F1 9.8 Tf [(with Prodromal and Early HD. PLOS Currents Huntington Disease. 2011 Aug 11 . Edition 1. doi: 10.1371/currents.RRN1254.)] TJ ET q 15.000 32.753 577.500 604.304 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 [(Day-to-day functioning is a component of health-related quality of life and is an important end point for therapies to treat )] TJ ET BT 26.250 578.476 Td /F1 9.8 Tf [(Huntington Disease \(HD\). Specific areas of day-to-day function changes have not been reported for prodromal or very early )] TJ ET BT 26.250 566.571 Td /F1 9.8 Tf [(stages of HD. An exploratory self-report telephone interview was conducted with sixteen people with prodromal HD or early HD )] TJ ET BT 26.250 554.667 Td /F1 9.8 Tf [(who met criteria designed to capture research participants most near to motor diagnosis. All completed semi-structured )] TJ ET BT 26.250 542.762 Td /F1 9.8 Tf [(interviews on function in nine aspects of day-to-day life. Out of 16, 14 reported changes in at least one area. All day-to-day )] TJ ET BT 26.250 530.857 Td /F1 9.8 Tf [(function areas were endorsed by at least one participant with driving being the most common area endorsed by 11/16. Changes )] TJ ET BT 26.250 518.952 Td /F1 9.8 Tf [(in ability to perform some day-to-day tasks are experienced by people who are close to the time of clinical diagnosis for HD. )] TJ ET BT 26.250 507.048 Td /F1 9.8 Tf [(Functional ability is likely to be an important component of outcome assessments of clinical trials and in ongoing clinical )] TJ ET BT 26.250 495.143 Td /F1 9.8 Tf [(management.)] TJ ET BT 26.250 458.540 Td /F4 12.0 Tf [(Introduction)] TJ ET BT 26.250 438.586 Td /F1 9.8 Tf [(Huntington disease \(HD\) is an autosomal dominant, progressive neurodegenerative disorder in which losses of neurologic )] TJ ET BT 26.250 426.681 Td /F1 9.8 Tf [(function continue until the end of the persons life. The diagnosis of HD traditionally is made with onset of motor symptoms. This )] TJ ET BT 26.250 414.777 Td /F1 9.8 Tf [(typically occurs in the fourth decade of life )] TJ ET 0.267 0.267 0.267 rg BT 209.959 414.777 Td /F1 9.8 Tf [([1])] TJ ET 0.271 0.267 0.267 rg BT 220.802 414.777 Td /F1 9.8 Tf [( , when individuals are employed and may be parenting minor age or young adult )] TJ ET BT 26.250 402.872 Td /F1 9.8 Tf [(children. Cognitive, motor, sensory, physiologic, and neuroimaging markers of the earliest phase of this condition have been )] TJ ET BT 26.250 390.967 Td /F1 9.8 Tf [(reported )] TJ ET 0.267 0.267 0.267 rg BT 65.269 390.967 Td /F1 9.8 Tf [([2])] TJ ET 0.271 0.267 0.267 rg BT 76.112 390.967 Td /F1 9.8 Tf [( , but clear descriptions of the effects of these changes on day-to-day function have not yet been possible due to )] TJ ET BT 26.250 379.062 Td /F1 9.8 Tf [(limited sensitivity of existing measures )] TJ ET 0.267 0.267 0.267 rg BT 194.213 379.062 Td /F1 9.8 Tf [([2] )] TJ ET 0.271 0.267 0.267 rg BT 207.766 379.062 Td /F1 9.8 Tf [(.)] TJ ET BT 26.250 359.658 Td /F1 9.8 Tf [(In plain language, function refers to a persons abilities to do their daily tasks and routines in their daily life. However, the )] TJ ET BT 26.250 347.753 Td /F1 9.8 Tf [(concept of ability to perform daily tasks is used in a variety of ways. The FDA description of patient-reported outcomes in clinical )] TJ ET BT 26.250 335.848 Td /F1 9.8 Tf [(trials includes measures of any aspect of a patients health status that document the effect of a disease on a persons quality of )] TJ ET BT 26.250 323.943 Td /F1 9.8 Tf [(life, which in turn may include the persons ability to perform daily activities \(FDA, 2006\). In the public health arena, health )] TJ ET BT 26.250 312.039 Td /F1 9.8 Tf [(related quality of life refers to the effect of chronic illness on a persons day-to-day life )] TJ ET 0.267 0.267 0.267 rg BT 396.916 312.039 Td /F1 9.8 Tf [([3])] TJ ET 0.271 0.267 0.267 rg BT 407.758 312.039 Td /F1 9.8 Tf [( . The notion of function status is a )] TJ ET BT 26.250 300.134 Td /F1 9.8 Tf [(component of a health-related quality of life model )] TJ ET 0.267 0.267 0.267 rg BT 244.650 300.134 Td /F1 9.8 Tf [([4])] TJ ET 0.271 0.267 0.267 rg BT 255.492 300.134 Td /F1 9.8 Tf [( , and it refers to the ability to perform tasks in multiple domains such as )] TJ ET BT 26.250 288.229 Td /F1 9.8 Tf [(ones physical, social role, and psychological function on a day-to-day basis )] TJ ET 0.267 0.267 0.267 rg BT 355.186 288.229 Td /F1 9.8 Tf [([5])] TJ ET 0.271 0.267 0.267 rg BT 366.028 288.229 Td /F1 9.8 Tf [( .)] TJ ET BT 26.250 268.824 Td /F1 9.8 Tf [(The earliest phase described in HD is referred to as the prodrome, and research findings have documented features of the )] TJ ET BT 26.250 256.920 Td /F1 9.8 Tf [(disease up to 15 years prior to the diagnosis )] TJ ET 0.267 0.267 0.267 rg BT 220.265 256.920 Td /F1 9.8 Tf [([2])] TJ ET 0.271 0.267 0.267 rg BT 231.107 256.920 Td /F1 9.8 Tf [( . Ongoing studies in the US and in Europe on prodromal HD \(PREDICT-HD and )] TJ ET BT 26.250 245.015 Td /F1 9.8 Tf [(TRACK-HD\) )] TJ ET 0.267 0.267 0.267 rg BT 82.576 245.015 Td /F1 9.8 Tf [([6] [7])] TJ ET 0.271 0.267 0.267 rg BT 106.970 245.015 Td /F1 9.8 Tf [( use a variety of measures of functional assessments, including the UHDRS TFC scale )] TJ ET 0.267 0.267 0.267 rg BT 483.564 245.015 Td /F1 9.8 Tf [([8])] TJ ET 0.271 0.267 0.267 rg BT 494.406 245.015 Td /F1 9.8 Tf [( , SF 36 )] TJ ET 0.267 0.267 0.267 rg BT 531.261 245.015 Td /F1 9.8 Tf [([9])] TJ ET 0.271 0.267 0.267 rg BT 542.103 245.015 Td /F1 9.8 Tf [( , and )] TJ ET BT 26.250 233.110 Td /F1 9.8 Tf [(Functional Assessment scale \(FAS\) )] TJ ET 0.267 0.267 0.267 rg BT 183.381 233.110 Td /F1 9.8 Tf [([10])] TJ ET 0.271 0.267 0.267 rg BT 199.644 233.110 Td /F1 9.8 Tf [( . However, these measures do not provide sufficient detail regarding specific functional )] TJ ET BT 26.250 221.205 Td /F1 9.8 Tf [(deficits, nor do they assess factors that may contribute to these changes. The UHDRS TFC scale )] TJ ET 0.267 0.267 0.267 rg BT 447.840 221.205 Td /F1 9.8 Tf [([8])] TJ ET 0.271 0.267 0.267 rg BT 458.682 221.205 Td /F1 9.8 Tf [( is used in TRACK-HD and )] TJ ET BT 26.250 209.301 Td /F1 9.8 Tf [(PREDICT-HD. In addition, TRACK-HD uses participant self reports on the SF 36 )] TJ ET 0.267 0.267 0.267 rg BT 375.739 209.301 Td /F1 9.8 Tf [([7])] TJ ET 0.271 0.267 0.267 rg BT 386.581 209.301 Td /F1 9.8 Tf [( . The SF 36 provides scales to measure )] TJ ET BT 26.250 197.396 Td /F1 9.8 Tf [(physical and social aspects of functioning )] TJ ET 0.267 0.267 0.267 rg BT 207.795 197.396 Td /F1 9.8 Tf [([9])] TJ ET 0.271 0.267 0.267 rg BT 218.637 197.396 Td /F1 9.8 Tf [( . The TFC includes ratings by the person with prodromal HD or with the persons )] TJ ET BT 26.250 185.491 Td /F1 9.8 Tf [(companion, of a persons self reported abilities to maintain their occupation, finances, domestic chores, activities of daily living, )] TJ ET BT 26.250 173.586 Td /F1 9.8 Tf [(and whether the person resides at home with or without support or in a full time skilled nursing facility. The FAS )] TJ ET 0.267 0.267 0.267 rg BT 507.988 173.586 Td /F1 9.8 Tf [([10])] TJ ET 0.271 0.267 0.267 rg BT 524.251 173.586 Td /F1 9.8 Tf [( is a )] TJ ET BT 26.250 161.682 Td /F1 9.8 Tf [(questionnaire of tasks related to occupation, finances, activities of daily living, domestic chores, level of care, and physical )] TJ ET BT 26.250 149.777 Td /F1 9.8 Tf [(abilities.)] TJ ET BT 26.250 130.372 Td /F1 9.8 Tf [(These global measures of functioning may not be sensitive to subtle changes in functional abilities that occur in prodromal HD. )] TJ ET BT 26.250 118.467 Td /F1 9.8 Tf [(For example, when administered to 786 participants in PREDICT-HD, over 88% of participants scored at ceiling on the TFC or )] TJ ET BT 26.250 106.563 Td /F1 9.8 Tf [(FAS. Among those participants, 5-7% reported some loss on questions about work and managing finances )] TJ ET 0.267 0.267 0.267 rg BT 489.053 106.563 Td /F1 9.8 Tf [([2])] TJ ET 0.271 0.267 0.267 rg BT 499.895 106.563 Td /F1 9.8 Tf [( . A separate )] TJ ET BT 26.250 94.658 Td /F1 9.8 Tf [(analysis of 265 people who were diagnosed as having HD during their prospective participation in Huntington Study Group )] TJ ET BT 26.250 82.753 Td /F1 9.8 Tf [(projects )] TJ ET 0.267 0.267 0.267 rg BT 63.095 82.753 Td /F1 9.8 Tf [([11])] TJ ET 0.271 0.267 0.267 rg BT 79.358 82.753 Td /F1 9.8 Tf [( identified that functional loss is strongly related to changes in motor scores; cognitive scores were also associated )] TJ ET BT 26.250 70.848 Td /F1 9.8 Tf [(with decreased function regarding managing finances, driving safely, supervising children, and being able to volunteer; )] TJ ET BT 26.250 58.944 Td /F1 9.8 Tf [(depression scores were related to loss of ability to engage in usual employment. Thus, measures to be used in upcoming )] TJ ET BT 26.250 47.039 Td /F1 9.8 Tf [(clinical trials and in clinical assessments of people with prodromal HD would be needed that are sensitive to day-to-day real-life )] 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 [(Self Reports of Day-to-Day Function in a Small Cohort of )] TJ ET BT 15.000 693.094 Td /F2 21.0 Tf [(People with Prodromal and Early HD)] TJ ET Q 0.271 0.267 0.267 rg BT 15.000 675.088 Td /F3 9.8 Tf [(August 11, 2011)] TJ ET BT 83.523 675.088 Td /F3 9.8 Tf [()] TJ ET 0.267 0.267 0.267 rg BT 88.398 675.088 Td /F3 9.8 Tf [(Epidemiology)] TJ ET BT 26.250 663.247 Td /F1 9.8 Tf [(Janet Williams)] TJ ET 0.271 0.267 0.267 rg BT 89.089 663.247 Td /F1 9.8 Tf [(, )] TJ ET 0.267 0.267 0.267 rg BT 94.510 663.247 Td /F1 9.8 Tf [(Nancy Downing)] TJ ET 0.271 0.267 0.267 rg BT 162.779 663.247 Td /F1 9.8 Tf [(, )] TJ ET 0.267 0.267 0.267 rg BT 168.200 663.247 Td /F1 9.8 Tf [(Anthony L Vaccarino)] TJ ET 0.271 0.267 0.267 rg BT 258.163 663.247 Td /F1 9.8 Tf [(, )] TJ ET 0.267 0.267 0.267 rg BT 263.584 663.247 Td /F1 9.8 Tf [(Mark Guttman)] TJ ET 0.271 0.267 0.267 rg BT 325.351 663.247 Td /F1 9.8 Tf [(, )] TJ ET 0.267 0.267 0.267 rg BT 330.772 663.247 Td /F1 9.8 Tf [(Jane S. Paulsen)] TJ ET 0.271 0.267 0.267 rg BT 26.250 651.342 Td /F1 9.8 Tf [(Williams J, Downing N, Vaccarino AL, Guttman M, Paulsen JS. Self Reports of Day-to-Day Function in a Small Cohort of )] TJ ET BT 548.051 651.342 Td /F1 9.8 Tf [(People )] TJ ET BT 26.250 639.438 Td /F1 9.8 Tf [(with Prodromal and Early HD. PLOS Currents Huntington Disease. 2011 Aug 11 . Edition 1. doi: 10.1371/currents.RRN1254.)] TJ ET q 15.000 32.753 577.500 604.304 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 [(Day-to-day functioning is a component of health-related quality of life and is an important end point for therapies to treat )] TJ ET BT 26.250 578.476 Td /F1 9.8 Tf [(Huntington Disease \(HD\). Specific areas of day-to-day function changes have not been reported for prodromal or very early )] TJ ET BT 26.250 566.571 Td /F1 9.8 Tf [(stages of HD. An exploratory self-report telephone interview was conducted with sixteen people with prodromal HD or early HD )] TJ ET BT 26.250 554.667 Td /F1 9.8 Tf [(who met criteria designed to capture research participants most near to motor diagnosis. All completed semi-structured )] TJ ET BT 26.250 542.762 Td /F1 9.8 Tf [(interviews on function in nine aspects of day-to-day life. Out of 16, 14 reported changes in at least one area. All day-to-day )] TJ ET BT 26.250 530.857 Td /F1 9.8 Tf [(function areas were endorsed by at least one participant with driving being the most common area endorsed by 11/16. Changes )] TJ ET BT 26.250 518.952 Td /F1 9.8 Tf [(in ability to perform some day-to-day tasks are experienced by people who are close to the time of clinical diagnosis for HD. )] TJ ET BT 26.250 507.048 Td /F1 9.8 Tf [(Functional ability is likely to be an important component of outcome assessments of clinical trials and in ongoing clinical )] TJ ET BT 26.250 495.143 Td /F1 9.8 Tf [(management.)] TJ ET BT 26.250 458.540 Td /F4 12.0 Tf [(Introduction)] TJ ET BT 26.250 438.586 Td /F1 9.8 Tf [(Huntington disease \(HD\) is an autosomal dominant, progressive neurodegenerative disorder in which losses of neurologic )] TJ ET BT 26.250 426.681 Td /F1 9.8 Tf [(function continue until the end of the persons life. The diagnosis of HD traditionally is made with onset of motor symptoms. This )] TJ ET BT 26.250 414.777 Td /F1 9.8 Tf [(typically occurs in the fourth decade of life )] TJ ET 0.267 0.267 0.267 rg BT 209.959 414.777 Td /F1 9.8 Tf [([1])] TJ ET 0.271 0.267 0.267 rg BT 220.802 414.777 Td /F1 9.8 Tf [( , when individuals are employed and may be parenting minor age or young adult )] TJ ET BT 26.250 402.872 Td /F1 9.8 Tf [(children. Cognitive, motor, sensory, physiologic, and neuroimaging markers of the earliest phase of this condition have been )] TJ ET BT 26.250 390.967 Td /F1 9.8 Tf [(reported )] TJ ET 0.267 0.267 0.267 rg BT 65.269 390.967 Td /F1 9.8 Tf [([2])] TJ ET 0.271 0.267 0.267 rg BT 76.112 390.967 Td /F1 9.8 Tf [( , but clear descriptions of the effects of these changes on day-to-day function have not yet been possible due to )] TJ ET BT 26.250 379.062 Td /F1 9.8 Tf [(limited sensitivity of existing measures )] TJ ET 0.267 0.267 0.267 rg BT 194.213 379.062 Td /F1 9.8 Tf [([2] )] TJ ET 0.271 0.267 0.267 rg BT 207.766 379.062 Td /F1 9.8 Tf [(.)] TJ ET BT 26.250 359.658 Td /F1 9.8 Tf [(In plain language, function refers to a persons abilities to do their daily tasks and routines in their daily life. However, the )] TJ ET BT 26.250 347.753 Td /F1 9.8 Tf [(concept of ability to perform daily tasks is used in a variety of ways. The FDA description of patient-reported outcomes in clinical )] TJ ET BT 26.250 335.848 Td /F1 9.8 Tf [(trials includes measures of any aspect of a patients health status that document the effect of a disease on a persons quality of )] TJ ET BT 26.250 323.943 Td /F1 9.8 Tf [(life, which in turn may include the persons ability to perform daily activities \(FDA, 2006\). In the public health arena, health )] TJ ET BT 26.250 312.039 Td /F1 9.8 Tf [(related quality of life refers to the effect of chronic illness on a persons day-to-day life )] TJ ET 0.267 0.267 0.267 rg BT 396.916 312.039 Td /F1 9.8 Tf [([3])] TJ ET 0.271 0.267 0.267 rg BT 407.758 312.039 Td /F1 9.8 Tf [( . The notion of function status is a )] TJ ET BT 26.250 300.134 Td /F1 9.8 Tf [(component of a health-related quality of life model )] TJ ET 0.267 0.267 0.267 rg BT 244.650 300.134 Td /F1 9.8 Tf [([4])] TJ ET 0.271 0.267 0.267 rg BT 255.492 300.134 Td /F1 9.8 Tf [( , and it refers to the ability to perform tasks in multiple domains such as )] TJ ET BT 26.250 288.229 Td /F1 9.8 Tf [(ones physical, social role, and psychological function on a day-to-day basis )] TJ ET 0.267 0.267 0.267 rg BT 355.186 288.229 Td /F1 9.8 Tf [([5])] TJ ET 0.271 0.267 0.267 rg BT 366.028 288.229 Td /F1 9.8 Tf [( .)] TJ ET BT 26.250 268.824 Td /F1 9.8 Tf [(The earliest phase described in HD is referred to as the prodrome, and research findings have documented features of the )] TJ ET BT 26.250 256.920 Td /F1 9.8 Tf [(disease up to 15 years prior to the diagnosis )] TJ ET 0.267 0.267 0.267 rg BT 220.265 256.920 Td /F1 9.8 Tf [([2])] TJ ET 0.271 0.267 0.267 rg BT 231.107 256.920 Td /F1 9.8 Tf [( . Ongoing studies in the US and in Europe on prodromal HD \(PREDICT-HD and )] TJ ET BT 26.250 245.015 Td /F1 9.8 Tf [(TRACK-HD\) )] TJ ET 0.267 0.267 0.267 rg BT 82.576 245.015 Td /F1 9.8 Tf [([6] [7])] TJ ET 0.271 0.267 0.267 rg BT 106.970 245.015 Td /F1 9.8 Tf [( use a variety of measures of functional assessments, including the UHDRS TFC scale )] TJ ET 0.267 0.267 0.267 rg BT 483.564 245.015 Td /F1 9.8 Tf [([8])] TJ ET 0.271 0.267 0.267 rg BT 494.406 245.015 Td /F1 9.8 Tf [( , SF 36 )] TJ ET 0.267 0.267 0.267 rg BT 531.261 245.015 Td /F1 9.8 Tf [([9])] TJ ET 0.271 0.267 0.267 rg BT 542.103 245.015 Td /F1 9.8 Tf [( , and )] TJ ET BT 26.250 233.110 Td /F1 9.8 Tf [(Functional Assessment scale \(FAS\) )] TJ ET 0.267 0.267 0.267 rg BT 183.381 233.110 Td /F1 9.8 Tf [([10])] TJ ET 0.271 0.267 0.267 rg BT 199.644 233.110 Td /F1 9.8 Tf [( . However, these measures do not provide sufficient detail regarding specific functional )] TJ ET BT 26.250 221.205 Td /F1 9.8 Tf [(deficits, nor do they assess factors that may contribute to these changes. The UHDRS TFC scale )] TJ ET 0.267 0.267 0.267 rg BT 447.840 221.205 Td /F1 9.8 Tf [([8])] TJ ET 0.271 0.267 0.267 rg BT 458.682 221.205 Td /F1 9.8 Tf [( is used in TRACK-HD and )] TJ ET BT 26.250 209.301 Td /F1 9.8 Tf [(PREDICT-HD. In addition, TRACK-HD uses participant self reports on the SF 36 )] TJ ET 0.267 0.267 0.267 rg BT 375.739 209.301 Td /F1 9.8 Tf [([7])] TJ ET 0.271 0.267 0.267 rg BT 386.581 209.301 Td /F1 9.8 Tf [( . The SF 36 provides scales to measure )] TJ ET BT 26.250 197.396 Td /F1 9.8 Tf [(physical and social aspects of functioning )] TJ ET 0.267 0.267 0.267 rg BT 207.795 197.396 Td /F1 9.8 Tf [([9])] TJ ET 0.271 0.267 0.267 rg BT 218.637 197.396 Td /F1 9.8 Tf [( . The TFC includes ratings by the person with prodromal HD or with the persons )] TJ ET BT 26.250 185.491 Td /F1 9.8 Tf [(companion, of a persons self reported abilities to maintain their occupation, finances, domestic chores, activities of daily living, )] TJ ET BT 26.250 173.586 Td /F1 9.8 Tf [(and whether the person resides at home with or without support or in a full time skilled nursing facility. The FAS )] TJ ET 0.267 0.267 0.267 rg BT 507.988 173.586 Td /F1 9.8 Tf [([10])] TJ ET 0.271 0.267 0.267 rg BT 524.251 173.586 Td /F1 9.8 Tf [( is a )] TJ ET BT 26.250 161.682 Td /F1 9.8 Tf [(questionnaire of tasks related to occupation, finances, activities of daily living, domestic chores, level of care, and physical )] TJ ET BT 26.250 149.777 Td /F1 9.8 Tf [(abilities.)] TJ ET BT 26.250 130.372 Td /F1 9.8 Tf [(These global measures of functioning may not be sensitive to subtle changes in functional abilities that occur in prodromal HD. )] TJ ET BT 26.250 118.467 Td /F1 9.8 Tf [(For example, when administered to 786 participants in PREDICT-HD, over 88% of participants scored at ceiling on the TFC or )] TJ ET BT 26.250 106.563 Td /F1 9.8 Tf [(FAS. Among those participants, 5-7% reported some loss on questions about work and managing finances )] TJ ET 0.267 0.267 0.267 rg BT 489.053 106.563 Td /F1 9.8 Tf [([2])] TJ ET 0.271 0.267 0.267 rg BT 499.895 106.563 Td /F1 9.8 Tf [( . A separate )] TJ ET BT 26.250 94.658 Td /F1 9.8 Tf [(analysis of 265 people who were diagnosed as having HD during their prospective participation in Huntington Study Group )] TJ ET BT 26.250 82.753 Td /F1 9.8 Tf [(projects )] TJ ET 0.267 0.267 0.267 rg BT 63.095 82.753 Td /F1 9.8 Tf [([11])] TJ ET 0.271 0.267 0.267 rg BT 79.358 82.753 Td /F1 9.8 Tf [( identified that functional loss is strongly related to changes in motor scores; cognitive scores were also associated )] TJ ET BT 26.250 70.848 Td /F1 9.8 Tf [(with decreased function regarding managing finances, driving safely, supervising children, and being able to volunteer; )] TJ ET BT 26.250 58.944 Td /F1 9.8 Tf [(depression scores were related to loss of ability to engage in usual employment. 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Although measures are under development to address specific components of function, including ones work )] TJ ET BT 26.250 755.571 Td /F1 9.8 Tf [(performance and quality of life )] TJ ET 0.267 0.267 0.267 rg BT 159.562 755.571 Td /F1 9.8 Tf [([12])] TJ ET 0.271 0.267 0.267 rg BT 175.825 755.571 Td /F1 9.8 Tf [( , no measure captures the full range of tasks that comprise the day-to-day life of people with )] TJ ET BT 26.250 743.667 Td /F1 9.8 Tf [(prodromal HD.)] TJ ET BT 26.250 724.262 Td /F1 9.8 Tf [(Research on the potential effect of interventions to delay or modify symptoms is limited by the absence of measures of day-to-)] TJ ET BT 26.250 712.357 Td /F1 9.8 Tf [(day function activities across the prodromal and early diagnostic phases of HD. This includes those activities that may be )] TJ ET BT 26.250 700.452 Td /F1 9.8 Tf [(diminishing at the time surrounding the time of diagnosis. Instruments are needed that document patient reported outcomes )] TJ ET 0.267 0.267 0.267 rg BT 561.135 700.452 Td /F1 9.8 Tf [([13])] TJ ET 0.271 0.267 0.267 rg BT 26.250 688.548 Td /F1 9.8 Tf [(. When developing these measures, qualitative methods such as interviews may be useful to identify relevant and appropriately )] TJ ET BT 26.250 676.643 Td /F1 9.8 Tf [(worded items )] TJ ET 0.267 0.267 0.267 rg BT 86.934 676.643 Td /F1 9.8 Tf [([14])] TJ ET 0.271 0.267 0.267 rg BT 103.197 676.643 Td /F1 9.8 Tf [( . The purpose of this study was to systematically examine the range of day-to-day tasks and limits on the )] TJ ET BT 26.250 664.738 Td /F1 9.8 Tf [(performance of day-to-day tasks reported by people with prodromal HD or recently diagnosed HD, in order to more completely )] TJ ET BT 26.250 652.833 Td /F1 9.8 Tf [(characterize changes experienced in this time period for the development of patient reported outcome measures.)] TJ ET BT 26.250 633.429 Td /F1 9.8 Tf [(As reviewed above, the available quantitative data has been queried with regards to day-to-day functions in prodromal and very )] TJ ET BT 26.250 621.524 Td /F1 9.8 Tf [(early HD. Findings have suggested that the currently available measures lack sensitivity to prodromal and very early diseases. )] TJ ET BT 26.250 609.619 Td /F1 9.8 Tf [(This limitation is expected since most functional scales were initially developed for neurodegenerative diseases to track stages )] TJ ET BT 26.250 597.714 Td /F1 9.8 Tf [(of dementia. Only more recently have we had the ability to identify and track persons at high risk for neurodegenerative )] TJ ET BT 26.250 585.810 Td /F1 9.8 Tf [(diseases through efforts such as Mild Cognitive Impairment and PREDICT-HD. Findings suggest that new information is needed )] TJ ET BT 26.250 573.905 Td /F1 9.8 Tf [(to better develop the earliest functional changes that occur prior to formal diagnosis of neurodegenerative disease. The current )] TJ ET BT 26.250 562.000 Td /F1 9.8 Tf [(study was designed to solicit qualitative data to assist with the development of more sensitive measures. In an effort to )] TJ ET BT 26.250 550.095 Td /F1 9.8 Tf [(maximize the data obtained through the qualitative interviews, we created an algorithm to recruit prodromal research volunteers )] TJ ET BT 26.250 538.191 Td /F1 9.8 Tf [(who are considered most close to receiving a formal motor diagnosis and who were most likely to experience early functional )] TJ ET BT 26.250 526.286 Td /F1 9.8 Tf [(decline.)] TJ ET BT 26.250 489.683 Td /F4 12.0 Tf [(Methods)] TJ ET BT 26.250 469.729 Td /F1 9.8 Tf [(This is an exploratory study using descriptive qualitative methods and a single telephone semi-structured interview.)] TJ ET BT 26.250 450.324 Td /F4 9.8 Tf [(Participants)] TJ ET BT 26.250 430.920 Td /F1 9.8 Tf [(Sixteen people who were enrolled at one of two PREDICT-HD research sites participated in the IRB-approved telephone )] TJ ET BT 26.250 419.015 Td /F1 9.8 Tf [(interviews. Participants were selected from the PREDICT-HD study based on one of the following criteria:)] TJ ET BT 26.250 399.610 Td /F1 9.8 Tf [(\(1\) were considered to be near diagnosis based upon formula derived from CAG repeat length and current age)] TJ ET 0.267 0.267 0.267 rg BT 509.635 399.610 Td /F1 9.8 Tf [( [15])] TJ ET 0.271 0.267 0.267 rg BT 528.609 399.610 Td /F1 9.8 Tf [( ; \(2\) )] TJ ET BT 26.250 387.705 Td /F1 9.8 Tf [(received a motor diagnosis according to the UHDRS motor score within the last 12 months; \(3\) obtained a UHDRS total motor )] TJ ET BT 26.250 375.801 Td /F1 9.8 Tf [(score of >10 at their most recent PREDICT-HD visit; or \(4\) were in the 75)] TJ ET BT 341.331 379.689 Td /F1 8.7 Tf [(th)] TJ ET BT 348.559 375.801 Td /F1 9.8 Tf [(percentile of longitudinal change in UHDRS total )] TJ ET BT 26.250 363.896 Td /F1 9.8 Tf [(motor score.)] TJ ET BT 26.250 344.491 Td /F1 9.8 Tf [(The project received approval from The University of Iowa Institutional Review Board and the Centre for Addiction and Mental )] TJ ET BT 26.250 332.586 Td /F1 9.8 Tf [(Health Research Ethics Board in Toronto, Canada. The majority of participants \(11/16\) were female. Six were from Canada and )] TJ ET BT 26.250 320.682 Td /F1 9.8 Tf [(10 from the US. The mean CAG length was 41.38 \(SD 1.45\) and range 38-44. Mean age was 65.6 \(SD 10.0\) and range 36.5-)] TJ ET BT 26.250 308.777 Td /F1 9.8 Tf [(78.8. Twelve had been diagnosed at the time of the interview.)] TJ ET BT 26.250 289.372 Td /F4 9.8 Tf [(Interview Guide and Data Collection)] TJ ET BT 26.250 269.967 Td /F1 9.8 Tf [(A semi-structured interview guide \(Figure 1\) was developed by the authors for this project. Topics were selected based on a )] TJ ET BT 26.250 258.063 Td /F1 9.8 Tf [(review of the literature, clinical experience of the research team, and prior interviews conducted during the development of an )] TJ ET BT 26.250 246.158 Td /F1 9.8 Tf [(instrument focused specifically on ability to perform tasks at work. After completion of informed consent procedures, each )] TJ ET BT 26.250 234.253 Td /F1 9.8 Tf [(person participated in a telephone interview conducted by a team member who is an experienced interviewer. Interviews ranged )] TJ ET BT 26.250 222.348 Td /F1 9.8 Tf [(from 4-35 minutes, with the average being 13.5 minutes. The shorter interview times were for those participants who had no )] TJ ET BT 26.250 210.444 Td /F1 9.8 Tf [(functional changes to report. All interviews were audiotaped and transcribed verbatim. Data saturation was reached after six )] TJ ET BT 26.250 198.539 Td /F1 9.8 Tf [(interviews; after that we did not learn of other day-to-day function changes not previously mentioned by other participants.)] TJ ET BT 26.250 179.134 Td /F4 9.8 Tf [(Figure 1. Day-to-Day Function Semi-Structured Interview Guide)] TJ ET BT 26.250 159.729 Td /F5 9.8 Tf [(We are interested in learning how things are going in your day-to-day life. What is this like for you?)] TJ ET BT 26.250 140.325 Td /F5 9.8 Tf [(Some people have told us they have noticed changes in their ability to do certain day-to-day tasks. Ill ask you about some )] TJ ET BT 26.250 128.420 Td /F5 9.8 Tf [(specific topics. [Probes for each question] In what areas do you need help, What do you do about this, Has anyone commented )] TJ ET BT 26.250 116.515 Td /F5 9.8 Tf [(on your \(fill in the topic\)?)] TJ ET BT 26.250 97.110 Td /F5 9.8 Tf [(1. Please tell me about your)] TJ ET BT 147.101 97.110 Td /F5 9.8 Tf [(household chores.)] TJ ET BT 226.768 97.110 Td /F5 9.8 Tf [( Do you ordinarily take care of your own home? What tasks do you ordinarily do? )] TJ ET BT 26.250 85.206 Td /F5 9.8 Tf [(Have there been any changes in your ability to do these chores?)] TJ ET BT 26.250 65.801 Td /F5 9.8 Tf [(2. Please tell me about)] TJ ET BT 125.427 65.801 Td /F5 9.8 Tf [(getting to places)] TJ ET BT 196.427 65.801 Td /F5 9.8 Tf [( you need to go. Do you ordinarily drive or use public transportation? Do you usually get )] TJ ET BT 26.250 53.896 Td /F5 9.8 Tf [(around by yourself? Has there been a change in this? Have you stopped doing things because of problems getting around?)] TJ ET Q q 15.000 24.611 577.500 752.389 re W n 0.271 0.267 0.267 rg BT 26.250 767.476 Td /F1 9.8 Tf [(function. Although measures are under development to address specific components of function, including ones work )] TJ ET BT 26.250 755.571 Td /F1 9.8 Tf [(performance and quality of life )] TJ ET 0.267 0.267 0.267 rg BT 159.562 755.571 Td /F1 9.8 Tf [([12])] TJ ET 0.271 0.267 0.267 rg BT 175.825 755.571 Td /F1 9.8 Tf [( , no measure captures the full range of tasks that comprise the day-to-day life of people with )] TJ ET BT 26.250 743.667 Td /F1 9.8 Tf [(prodromal HD.)] TJ ET BT 26.250 724.262 Td /F1 9.8 Tf [(Research on the potential effect of interventions to delay or modify symptoms is limited by the absence of measures of day-to-)] TJ ET BT 26.250 712.357 Td /F1 9.8 Tf [(day function activities across the prodromal and early diagnostic phases of HD. This includes those activities that may be )] TJ ET BT 26.250 700.452 Td /F1 9.8 Tf [(diminishing at the time surrounding the time of diagnosis. 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The purpose of this study was to systematically examine the range of day-to-day tasks and limits on the )] TJ ET BT 26.250 664.738 Td /F1 9.8 Tf [(performance of day-to-day tasks reported by people with prodromal HD or recently diagnosed HD, in order to more completely )] TJ ET BT 26.250 652.833 Td /F1 9.8 Tf [(characterize changes experienced in this time period for the development of patient reported outcome measures.)] TJ ET BT 26.250 633.429 Td /F1 9.8 Tf [(As reviewed above, the available quantitative data has been queried with regards to day-to-day functions in prodromal and very )] TJ ET BT 26.250 621.524 Td /F1 9.8 Tf [(early HD. Findings have suggested that the currently available measures lack sensitivity to prodromal and very early diseases. )] TJ ET BT 26.250 609.619 Td /F1 9.8 Tf [(This limitation is expected since most functional scales were initially developed for neurodegenerative diseases to track stages )] TJ ET BT 26.250 597.714 Td /F1 9.8 Tf [(of dementia. Only more recently have we had the ability to identify and track persons at high risk for neurodegenerative )] TJ ET BT 26.250 585.810 Td /F1 9.8 Tf [(diseases through efforts such as Mild Cognitive Impairment and PREDICT-HD. Findings suggest that new information is needed )] TJ ET BT 26.250 573.905 Td /F1 9.8 Tf [(to better develop the earliest functional changes that occur prior to formal diagnosis of neurodegenerative disease. The current )] TJ ET BT 26.250 562.000 Td /F1 9.8 Tf [(study was designed to solicit qualitative data to assist with the development of more sensitive measures. In an effort to )] TJ ET BT 26.250 550.095 Td /F1 9.8 Tf [(maximize the data obtained through the qualitative interviews, we created an algorithm to recruit prodromal research volunteers )] TJ ET BT 26.250 538.191 Td /F1 9.8 Tf [(who are considered most close to receiving a formal motor diagnosis and who were most likely to experience early functional )] TJ ET BT 26.250 526.286 Td /F1 9.8 Tf [(decline.)] TJ ET BT 26.250 489.683 Td /F4 12.0 Tf [(Methods)] TJ ET BT 26.250 469.729 Td /F1 9.8 Tf [(This is an exploratory study using descriptive qualitative methods and a single telephone semi-structured interview.)] TJ ET BT 26.250 450.324 Td /F4 9.8 Tf [(Participants)] TJ ET BT 26.250 430.920 Td /F1 9.8 Tf [(Sixteen people who were enrolled at one of two PREDICT-HD research sites participated in the IRB-approved telephone )] TJ ET BT 26.250 419.015 Td /F1 9.8 Tf [(interviews. Participants were selected from the PREDICT-HD study based on one of the following criteria:)] TJ ET BT 26.250 399.610 Td /F1 9.8 Tf [(\(1\) were considered to be near diagnosis based upon formula derived from CAG repeat length and current age)] TJ ET 0.267 0.267 0.267 rg BT 509.635 399.610 Td /F1 9.8 Tf [( [15])] TJ ET 0.271 0.267 0.267 rg BT 528.609 399.610 Td /F1 9.8 Tf [( ; \(2\) )] TJ ET BT 26.250 387.705 Td /F1 9.8 Tf [(received a motor diagnosis according to the UHDRS motor score within the last 12 months; \(3\) obtained a UHDRS total motor )] TJ ET BT 26.250 375.801 Td /F1 9.8 Tf [(score of >10 at their most recent PREDICT-HD visit; or \(4\) were in the 75)] TJ ET BT 341.331 379.689 Td /F1 8.7 Tf [(th)] TJ ET BT 348.559 375.801 Td /F1 9.8 Tf [(percentile of longitudinal change in UHDRS total )] TJ ET BT 26.250 363.896 Td /F1 9.8 Tf [(motor score.)] TJ ET BT 26.250 344.491 Td /F1 9.8 Tf [(The project received approval from The University of Iowa Institutional Review Board and the Centre for Addiction and Mental )] TJ ET BT 26.250 332.586 Td /F1 9.8 Tf [(Health Research Ethics Board in Toronto, Canada. The majority of participants \(11/16\) were female. Six were from Canada and )] TJ ET BT 26.250 320.682 Td /F1 9.8 Tf [(10 from the US. The mean CAG length was 41.38 \(SD 1.45\) and range 38-44. Mean age was 65.6 \(SD 10.0\) and range 36.5-)] TJ ET BT 26.250 308.777 Td /F1 9.8 Tf [(78.8. Twelve had been diagnosed at the time of the interview.)] TJ ET BT 26.250 289.372 Td /F4 9.8 Tf [(Interview Guide and Data Collection)] TJ ET BT 26.250 269.967 Td /F1 9.8 Tf [(A semi-structured interview guide \(Figure 1\) was developed by the authors for this project. Topics were selected based on a )] TJ ET BT 26.250 258.063 Td /F1 9.8 Tf [(review of the literature, clinical experience of the research team, and prior interviews conducted during the development of an )] TJ ET BT 26.250 246.158 Td /F1 9.8 Tf [(instrument focused specifically on ability to perform tasks at work. After completion of informed consent procedures, each )] TJ ET BT 26.250 234.253 Td /F1 9.8 Tf [(person participated in a telephone interview conducted by a team member who is an experienced interviewer. Interviews ranged )] TJ ET BT 26.250 222.348 Td /F1 9.8 Tf [(from 4-35 minutes, with the average being 13.5 minutes. The shorter interview times were for those participants who had no )] TJ ET BT 26.250 210.444 Td /F1 9.8 Tf [(functional changes to report. All interviews were audiotaped and transcribed verbatim. Data saturation was reached after six )] TJ ET BT 26.250 198.539 Td /F1 9.8 Tf [(interviews; after that we did not learn of other day-to-day function changes not previously mentioned by other participants.)] TJ ET BT 26.250 179.134 Td /F4 9.8 Tf [(Figure 1. Day-to-Day Function Semi-Structured Interview Guide)] TJ ET BT 26.250 159.729 Td /F5 9.8 Tf [(We are interested in learning how things are going in your day-to-day life. What is this like for you?)] TJ ET BT 26.250 140.325 Td /F5 9.8 Tf [(Some people have told us they have noticed changes in their ability to do certain day-to-day tasks. Ill ask you about some )] TJ ET BT 26.250 128.420 Td /F5 9.8 Tf [(specific topics. [Probes for each question] In what areas do you need help, What do you do about this, Has anyone commented )] TJ ET BT 26.250 116.515 Td /F5 9.8 Tf [(on your \(fill in the topic\)?)] TJ ET BT 26.250 97.110 Td /F5 9.8 Tf [(1. Please tell me about your)] TJ ET BT 147.101 97.110 Td /F5 9.8 Tf [(household chores.)] TJ ET BT 226.768 97.110 Td /F5 9.8 Tf [( Do you ordinarily take care of your own home? What tasks do you ordinarily do? )] TJ ET BT 26.250 85.206 Td /F5 9.8 Tf [(Have there been any changes in your ability to do these chores?)] TJ ET BT 26.250 65.801 Td /F5 9.8 Tf [(2. Please tell me about)] TJ ET BT 125.427 65.801 Td /F5 9.8 Tf [(getting to places)] TJ ET BT 196.427 65.801 Td /F5 9.8 Tf [( you need to go. Do you ordinarily drive or use public transportation? Do you usually get )] TJ ET BT 26.250 53.896 Td /F5 9.8 Tf [(around by yourself? Has there been a change in this? Have you stopped doing things because of problems getting around?)] TJ ET Q q 15.000 24.611 577.500 752.389 re W n 0.271 0.267 0.267 rg BT 26.250 767.476 Td /F1 9.8 Tf [(function. Although measures are under development to address specific components of function, including ones work )] TJ ET BT 26.250 755.571 Td /F1 9.8 Tf [(performance and quality of life )] TJ ET 0.267 0.267 0.267 rg BT 159.562 755.571 Td /F1 9.8 Tf [([12])] TJ ET 0.271 0.267 0.267 rg BT 175.825 755.571 Td /F1 9.8 Tf [( , no measure captures the full range of tasks that comprise the day-to-day life of people with )] TJ ET BT 26.250 743.667 Td /F1 9.8 Tf [(prodromal HD.)] TJ ET BT 26.250 724.262 Td /F1 9.8 Tf [(Research on the potential effect of interventions to delay or modify symptoms is limited by the absence of measures of day-to-)] TJ ET BT 26.250 712.357 Td /F1 9.8 Tf [(day function activities across the prodromal and early diagnostic phases of HD. This includes those activities that may be )] TJ ET BT 26.250 700.452 Td /F1 9.8 Tf [(diminishing at the time surrounding the time of diagnosis. Instruments are needed that document patient reported outcomes )] TJ ET 0.267 0.267 0.267 rg BT 561.135 700.452 Td /F1 9.8 Tf [([13])] TJ ET 0.271 0.267 0.267 rg BT 26.250 688.548 Td /F1 9.8 Tf [(. When developing these measures, qualitative methods such as interviews may be useful to identify relevant and appropriately )] TJ ET BT 26.250 676.643 Td /F1 9.8 Tf [(worded items )] TJ ET 0.267 0.267 0.267 rg BT 86.934 676.643 Td /F1 9.8 Tf [([14])] TJ ET 0.271 0.267 0.267 rg BT 103.197 676.643 Td /F1 9.8 Tf [( . The purpose of this study was to systematically examine the range of day-to-day tasks and limits on the )] TJ ET BT 26.250 664.738 Td /F1 9.8 Tf [(performance of day-to-day tasks reported by people with prodromal HD or recently diagnosed HD, in order to more completely )] TJ ET BT 26.250 652.833 Td /F1 9.8 Tf [(characterize changes experienced in this time period for the development of patient reported outcome measures.)] TJ ET BT 26.250 633.429 Td /F1 9.8 Tf [(As reviewed above, the available quantitative data has been queried with regards to day-to-day functions in prodromal and very )] TJ ET BT 26.250 621.524 Td /F1 9.8 Tf [(early HD. Findings have suggested that the currently available measures lack sensitivity to prodromal and very early diseases. )] TJ ET BT 26.250 609.619 Td /F1 9.8 Tf [(This limitation is expected since most functional scales were initially developed for neurodegenerative diseases to track stages )] TJ ET BT 26.250 597.714 Td /F1 9.8 Tf [(of dementia. Only more recently have we had the ability to identify and track persons at high risk for neurodegenerative )] TJ ET BT 26.250 585.810 Td /F1 9.8 Tf [(diseases through efforts such as Mild Cognitive Impairment and PREDICT-HD. Findings suggest that new information is needed )] TJ ET BT 26.250 573.905 Td /F1 9.8 Tf [(to better develop the earliest functional changes that occur prior to formal diagnosis of neurodegenerative disease. The current )] TJ ET BT 26.250 562.000 Td /F1 9.8 Tf [(study was designed to solicit qualitative data to assist with the development of more sensitive measures. In an effort to )] TJ ET BT 26.250 550.095 Td /F1 9.8 Tf [(maximize the data obtained through the qualitative interviews, we created an algorithm to recruit prodromal research volunteers )] TJ ET BT 26.250 538.191 Td /F1 9.8 Tf [(who are considered most close to receiving a formal motor diagnosis and who were most likely to experience early functional )] TJ ET BT 26.250 526.286 Td /F1 9.8 Tf [(decline.)] TJ ET BT 26.250 489.683 Td /F4 12.0 Tf [(Methods)] TJ ET BT 26.250 469.729 Td /F1 9.8 Tf [(This is an exploratory study using descriptive qualitative methods and a single telephone semi-structured interview.)] TJ ET BT 26.250 450.324 Td /F4 9.8 Tf [(Participants)] TJ ET BT 26.250 430.920 Td /F1 9.8 Tf [(Sixteen people who were enrolled at one of two PREDICT-HD research sites participated in the IRB-approved telephone )] TJ ET BT 26.250 419.015 Td /F1 9.8 Tf [(interviews. Participants were selected from the PREDICT-HD study based on one of the following criteria:)] TJ ET BT 26.250 399.610 Td /F1 9.8 Tf [(\(1\) were considered to be near diagnosis based upon formula derived from CAG repeat length and current age)] TJ ET 0.267 0.267 0.267 rg BT 509.635 399.610 Td /F1 9.8 Tf [( [15])] TJ ET 0.271 0.267 0.267 rg BT 528.609 399.610 Td /F1 9.8 Tf [( ; \(2\) )] TJ ET BT 26.250 387.705 Td /F1 9.8 Tf [(received a motor diagnosis according to the UHDRS motor score within the last 12 months; \(3\) obtained a UHDRS total motor )] TJ ET BT 26.250 375.801 Td /F1 9.8 Tf [(score of >10 at their most recent PREDICT-HD visit; or \(4\) were in the 75)] TJ ET BT 341.331 379.689 Td /F1 8.7 Tf [(th)] TJ ET BT 348.559 375.801 Td /F1 9.8 Tf [(percentile of longitudinal change in UHDRS total )] TJ ET BT 26.250 363.896 Td /F1 9.8 Tf [(motor score.)] TJ ET BT 26.250 344.491 Td /F1 9.8 Tf [(The project received approval from The University of Iowa Institutional Review Board and the Centre for Addiction and Mental )] TJ ET BT 26.250 332.586 Td /F1 9.8 Tf [(Health Research Ethics Board in Toronto, Canada. The majority of participants \(11/16\) were female. Six were from Canada and )] TJ ET BT 26.250 320.682 Td /F1 9.8 Tf [(10 from the US. The mean CAG length was 41.38 \(SD 1.45\) and range 38-44. Mean age was 65.6 \(SD 10.0\) and range 36.5-)] TJ ET BT 26.250 308.777 Td /F1 9.8 Tf [(78.8. Twelve had been diagnosed at the time of the interview.)] TJ ET BT 26.250 289.372 Td /F4 9.8 Tf [(Interview Guide and Data Collection)] TJ ET BT 26.250 269.967 Td /F1 9.8 Tf [(A semi-structured interview guide \(Figure 1\) was developed by the authors for this project. Topics were selected based on a )] TJ ET BT 26.250 258.063 Td /F1 9.8 Tf [(review of the literature, clinical experience of the research team, and prior interviews conducted during the development of an )] TJ ET BT 26.250 246.158 Td /F1 9.8 Tf [(instrument focused specifically on ability to perform tasks at work. After completion of informed consent procedures, each )] TJ ET BT 26.250 234.253 Td /F1 9.8 Tf [(person participated in a telephone interview conducted by a team member who is an experienced interviewer. Interviews ranged )] TJ ET BT 26.250 222.348 Td /F1 9.8 Tf [(from 4-35 minutes, with the average being 13.5 minutes. The shorter interview times were for those participants who had no )] TJ ET BT 26.250 210.444 Td /F1 9.8 Tf [(functional changes to report. All interviews were audiotaped and transcribed verbatim. Data saturation was reached after six )] TJ ET BT 26.250 198.539 Td /F1 9.8 Tf [(interviews; after that we did not learn of other day-to-day function changes not previously mentioned by other participants.)] TJ ET BT 26.250 179.134 Td /F4 9.8 Tf [(Figure 1. Day-to-Day Function Semi-Structured Interview Guide)] TJ ET BT 26.250 159.729 Td /F5 9.8 Tf [(We are interested in learning how things are going in your day-to-day life. What is this like for you?)] TJ ET BT 26.250 140.325 Td /F5 9.8 Tf [(Some people have told us they have noticed changes in their ability to do certain day-to-day tasks. Ill ask you about some )] TJ ET BT 26.250 128.420 Td /F5 9.8 Tf [(specific topics. [Probes for each question] In what areas do you need help, What do you do about this, Has anyone commented )] TJ ET BT 26.250 116.515 Td /F5 9.8 Tf [(on your \(fill in the topic\)?)] TJ ET BT 26.250 97.110 Td /F5 9.8 Tf [(1. Please tell me about your)] TJ ET BT 147.101 97.110 Td /F5 9.8 Tf [(household chores.)] TJ ET BT 226.768 97.110 Td /F5 9.8 Tf [( Do you ordinarily take care of your own home? What tasks do you ordinarily do? )] TJ ET BT 26.250 85.206 Td /F5 9.8 Tf [(Have there been any changes in your ability to do these chores?)] TJ ET BT 26.250 65.801 Td /F5 9.8 Tf [(2. Please tell me about)] TJ ET BT 125.427 65.801 Td /F5 9.8 Tf [(getting to places)] TJ ET BT 196.427 65.801 Td /F5 9.8 Tf [( you need to go. Do you ordinarily drive or use public transportation? Do you usually get )] TJ ET BT 26.250 53.896 Td /F5 9.8 Tf [(around by yourself? Has there been a change in this? Have you stopped doing things because of problems getting around?)] 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 Huntington Disease)] TJ ET Q endstream endobj 166 0 obj << /Type /Font /Subtype /Type1 /Name /F5 /BaseFont /Helvetica-Oblique /Encoding /WinAnsiEncoding >> endobj 167 0 obj << /Type /Annot /Subtype /Link /A 168 0 R /Border [0 0 0] /H /I /Rect [ 159.5617 754.6696 175.8247 764.5902 ] >> endobj 168 0 obj << /Type /Action >> endobj 169 0 obj << /Type /Annot /Subtype /Link /A 170 0 R /Border [0 0 0] /H /I /Rect [ 561.1350 699.5506 577.3980 709.4712 ] >> endobj 170 0 obj << /Type /Action >> endobj 171 0 obj << /Type /Annot /Subtype /Link /A 172 0 R /Border [0 0 0] /H /I /Rect [ 86.9340 675.7411 103.1970 685.6617 ] >> endobj 172 0 obj << /Type /Action >> endobj 173 0 obj << /Type /Annot /Subtype /Link /A 174 0 R /Border [0 0 0] /H /I /Rect [ 509.6355 398.7083 528.6090 408.6290 ] >> endobj 174 0 obj << /Type /Action >> endobj 175 0 obj << /Type /Annot /Subtype /Link /A 176 0 R /Border [0 0 0] /H /I /Rect [ 159.5617 754.6696 175.8247 764.5902 ] >> endobj 176 0 obj << /Type /Action >> endobj 177 0 obj << /Type /Annot /Subtype /Link /A 178 0 R /Border [0 0 0] /H /I /Rect [ 561.1350 699.5506 577.3980 709.4712 ] >> endobj 178 0 obj << /Type /Action >> endobj 179 0 obj << /Type /Annot /Subtype /Link /A 180 0 R /Border [0 0 0] /H /I /Rect [ 86.9340 675.7411 103.1970 685.6617 ] >> endobj 180 0 obj << /Type /Action >> endobj 181 0 obj << /Type /Annot /Subtype /Link /A 182 0 R /Border [0 0 0] /H /I /Rect [ 509.6355 398.7083 528.6090 408.6290 ] >> endobj 182 0 obj << /Type /Action >> endobj 183 0 obj << /Type /Annot /Subtype /Link /A 184 0 R /Border [0 0 0] /H /I /Rect [ 159.5617 754.6696 175.8247 764.5902 ] >> endobj 184 0 obj << /Type /Action >> endobj 185 0 obj << /Type /Annot /Subtype /Link /A 186 0 R /Border [0 0 0] /H /I /Rect [ 561.1350 699.5506 577.3980 709.4712 ] >> endobj 186 0 obj << /Type /Action >> endobj 187 0 obj << /Type /Annot /Subtype /Link /A 188 0 R /Border [0 0 0] /H /I /Rect [ 86.9340 675.7411 103.1970 685.6617 ] >> endobj 188 0 obj << /Type /Action >> endobj 189 0 obj << /Type /Annot /Subtype /Link /A 190 0 R /Border [0 0 0] /H /I /Rect [ 509.6355 398.7083 528.6090 408.6290 ] >> endobj 190 0 obj << /Type /Action >> endobj 191 0 obj << /Type /Page /Parent 3 0 R /Annots [ 193 0 R 195 0 R 197 0 R 199 0 R 201 0 R 203 0 R ] /Contents 192 0 R >> endobj 192 0 obj << /Length 30805 >> stream 0.271 0.267 0.267 rg q 15.000 17.301 577.500 759.699 re W n 0.271 0.267 0.267 rg BT 26.250 767.476 Td /F5 9.8 Tf [(3. Please tell me about)] TJ ET BT 125.427 767.476 Td /F5 9.8 Tf [(shopping.)] TJ ET BT 167.703 767.476 Td /F5 9.8 Tf [( Do you shop for things like groceries, items for your home, yourself, your car?)] TJ ET BT 26.250 748.071 Td /F5 9.8 Tf [(4. Please tell me about)] TJ ET BT 125.427 748.071 Td /F5 9.8 Tf [(cooking and meals at home.)] TJ ET BT 247.361 748.071 Td /F5 9.8 Tf [( Do you ordinarily prepare meals at home?)] TJ ET BT 26.250 728.667 Td /F5 9.8 Tf [(5. Please tell me about using the)] TJ ET BT 167.703 728.667 Td /F5 9.8 Tf [(telephone.)] TJ ET BT 213.236 728.667 Td /F5 9.8 Tf [( Do you ordinarily make calls, answer the phone?)] TJ ET BT 26.250 709.262 Td /F5 9.8 Tf [(6. Please tell me about things you usually enjoy. Do you start these)] TJ ET BT 316.186 709.262 Td /F5 9.8 Tf [(hobbies)] TJ ET BT 350.330 709.262 Td /F5 9.8 Tf [( on your own? Do you enjoy them if someone else )] TJ ET BT 26.250 697.357 Td /F5 9.8 Tf [(gets you started or takes you where you can enjoy that activity, e.g., going to church, going fishing, bowling?)] TJ ET BT 26.250 677.952 Td /F5 9.8 Tf [(7. Please tell me about your ability to handle your)] TJ ET BT 239.229 677.952 Td /F5 9.8 Tf [( finances.)] TJ ET BT 280.959 677.952 Td /F5 9.8 Tf [( Do you ordinarily take care of these yourself?)] TJ ET BT 26.250 658.548 Td /F5 9.8 Tf [(8. Please tell me about)] TJ ET BT 125.427 658.548 Td /F5 9.8 Tf [(work.)] TJ ET BT 148.720 658.548 Td /F5 9.8 Tf [( Do you ordinarily work for pay; is this full time work?)] TJ ET BT 26.250 639.143 Td /F5 9.8 Tf [(9. Please tell me about being around, or)] TJ ET BT 199.137 639.143 Td /F5 9.8 Tf [(interacting)] TJ ET BT 244.114 639.143 Td /F5 9.8 Tf [( with, other people: In what areas do you see changes, e.g., avoid being )] TJ ET BT 26.250 627.238 Td /F5 9.8 Tf [(around other people, become irritated or impatient with people)] TJ ET BT 26.250 607.833 Td /F5 9.8 Tf [(10. Last question:)] TJ ET BT 103.216 607.833 Td /F5 9.8 Tf [(What else)] TJ ET BT 146.565 607.833 Td /F5 9.8 Tf [( would you like to tell me?)] TJ ET BT 26.250 588.429 Td /F4 9.8 Tf [(Analysis)] TJ ET BT 26.250 569.024 Td /F1 9.8 Tf [(Two authors followed qualitative descriptive analysis techniques )] TJ ET 0.267 0.267 0.267 rg BT 304.778 569.024 Td /F1 9.8 Tf [([16])] TJ ET 0.271 0.267 0.267 rg BT 321.041 569.024 Td /F1 9.8 Tf [( . The data were initially coded using NVivo 8 software )] TJ ET 0.267 0.267 0.267 rg BT 557.849 569.024 Td /F1 9.8 Tf [([17])] TJ ET 0.271 0.267 0.267 rg BT 26.250 557.119 Td /F1 9.8 Tf [(. Data were independently coded and reviewed until there was 100% agreement between the two authors.)] TJ ET BT 26.250 520.517 Td /F4 12.0 Tf [(Results)] TJ ET BT 26.250 500.562 Td /F1 9.8 Tf [(Fourteen of the 16 participants described one or more changes in performance of day-to-day tasks. Each participant reporting )] TJ ET BT 26.250 488.658 Td /F1 9.8 Tf [(changes endorsed from 1-7 areas of function \(Table 1\). One person who did not endorse any of the 9 topics in the interview )] TJ ET BT 26.250 476.753 Td /F1 9.8 Tf [(guide reported the presence of involuntary movements. Specific functional tasks and examples of statements are provided )] TJ ET BT 26.250 464.848 Td /F1 9.8 Tf [(below. Participants are identified by a number only for the purpose of reporting the data.)] TJ ET q 26.250 454.967 555.000 0.000 re W n Q 0.965 0.965 0.965 rg 26.250 431.560 555.000 23.408 re f 0.267 0.267 0.267 rg 0.267 0.267 0.267 RG 26.250 454.967 m 581.250 454.967 l 580.500 454.217 l 27.000 454.217 l f 581.250 454.967 m 581.250 431.560 l 580.500 431.560 l 580.500 454.217 l f 26.250 454.967 m 26.250 431.560 l 27.000 431.560 l 27.000 454.217 l f 0.271 0.267 0.267 rg BT 33.000 440.891 Td /F4 9.0 Tf [(Table 1.)] TJ ET BT 66.516 440.891 Td /F1 9.0 Tf [( Functional Changes \(N=16\))] TJ ET 1.000 1.000 1.000 rg 26.250 270.872 555.000 160.688 re f 0.965 0.965 0.965 rg 27.000 430.435 443.527 0.375 re f 0.267 0.267 0.267 rg 26.625 430.435 443.902 0.750 re f 26.625 430.060 0.750 1.125 re f 0.965 0.965 0.965 rg 470.527 430.435 109.973 0.375 re f 0.267 0.267 0.267 rg 470.527 430.435 110.348 0.750 re f 580.125 430.060 0.750 1.125 re f 26.625 430.060 444.277 0.750 re f 26.625 414.178 0.750 16.631 re f 0.271 0.267 0.267 rg BT 31.875 420.205 Td /F1 9.8 Tf [(Driving)] TJ ET 0.267 0.267 0.267 rg 470.152 430.060 110.723 0.750 re f 470.152 414.178 0.750 16.631 re f 580.125 414.178 0.750 16.631 re f 0.271 0.267 0.267 rg BT 475.402 420.205 Td /F1 9.8 Tf [(11)] TJ ET 0.267 0.267 0.267 rg 26.625 414.178 444.277 0.750 re f 26.625 398.297 0.750 16.631 re f 0.271 0.267 0.267 rg BT 31.875 404.323 Td /F1 9.8 Tf [(Interactions)] TJ ET 0.267 0.267 0.267 rg 470.152 414.178 110.723 0.750 re f 470.152 398.297 0.750 16.631 re f 580.125 398.297 0.750 16.631 re f 0.271 0.267 0.267 rg BT 475.402 404.323 Td /F1 9.8 Tf [(8)] TJ ET 0.267 0.267 0.267 rg 26.625 398.297 444.277 0.750 re f 26.625 382.416 0.750 16.631 re f 0.271 0.267 0.267 rg BT 31.875 388.442 Td /F1 9.8 Tf [(Household chores)] TJ ET 0.267 0.267 0.267 rg 470.152 398.297 110.723 0.750 re f 470.152 382.416 0.750 16.631 re f 580.125 382.416 0.750 16.631 re f 0.271 0.267 0.267 rg BT 475.402 388.442 Td /F1 9.8 Tf [(8)] TJ ET 0.267 0.267 0.267 rg 26.625 382.416 444.277 0.750 re f 26.625 366.535 0.750 16.631 re f 0.271 0.267 0.267 rg BT 31.875 372.561 Td /F1 9.8 Tf [(Telephone)] TJ ET 0.267 0.267 0.267 rg 470.152 382.416 110.723 0.750 re f 470.152 366.535 0.750 16.631 re f 580.125 366.535 0.750 16.631 re f 0.271 0.267 0.267 rg BT 475.402 372.561 Td /F1 9.8 Tf [(7)] TJ ET 0.267 0.267 0.267 rg 26.625 366.535 444.277 0.750 re f 26.625 350.653 0.750 16.631 re f 0.271 0.267 0.267 rg BT 31.875 356.680 Td /F1 9.8 Tf [(Shopping)] TJ ET 0.267 0.267 0.267 rg 470.152 366.535 110.723 0.750 re f 470.152 350.653 0.750 16.631 re f 580.125 350.653 0.750 16.631 re f 0.271 0.267 0.267 rg BT 475.402 356.680 Td /F1 9.8 Tf [(6)] TJ ET 0.267 0.267 0.267 rg 26.625 350.653 444.277 0.750 re f 26.625 334.772 0.750 16.631 re f 0.271 0.267 0.267 rg BT 31.875 340.798 Td /F1 9.8 Tf [(Finances)] TJ ET 0.267 0.267 0.267 rg 470.152 350.653 110.723 0.750 re f 470.152 334.772 0.750 16.631 re f 580.125 334.772 0.750 16.631 re f 0.271 0.267 0.267 rg BT 475.402 340.798 Td /F1 9.8 Tf [(5)] TJ ET 0.267 0.267 0.267 rg 26.625 334.772 444.277 0.750 re f 26.625 318.891 0.750 16.631 re f 0.271 0.267 0.267 rg BT 31.875 324.917 Td /F1 9.8 Tf [(Paid work)] TJ ET 0.267 0.267 0.267 rg 470.152 334.772 110.723 0.750 re f 470.152 318.891 0.750 16.631 re f 580.125 318.891 0.750 16.631 re f 0.271 0.267 0.267 rg BT 475.402 324.917 Td /F1 9.8 Tf [(4)] TJ ET 0.267 0.267 0.267 rg 26.625 318.891 444.277 0.750 re f 26.625 303.010 0.750 16.631 re f 0.271 0.267 0.267 rg BT 31.875 309.036 Td /F1 9.8 Tf [(Cooking)] TJ ET 0.267 0.267 0.267 rg 470.152 318.891 110.723 0.750 re f 470.152 303.010 0.750 16.631 re f 580.125 303.010 0.750 16.631 re f 0.271 0.267 0.267 rg BT 475.402 309.036 Td /F1 9.8 Tf [(4)] TJ ET 0.267 0.267 0.267 rg 26.625 303.010 444.277 0.750 re f 26.625 287.128 0.750 16.631 re f 0.271 0.267 0.267 rg BT 31.875 293.155 Td /F1 9.8 Tf [(Hobbies)] TJ ET 0.267 0.267 0.267 rg 470.152 303.010 110.723 0.750 re f 470.152 287.128 0.750 16.631 re f 580.125 287.128 0.750 16.631 re f 0.271 0.267 0.267 rg BT 475.402 293.155 Td /F1 9.8 Tf [(1)] TJ ET 0.267 0.267 0.267 rg 26.625 287.128 444.277 0.750 re f 26.625 271.247 444.277 0.750 re f 26.625 271.247 0.750 16.631 re f 0.271 0.267 0.267 rg BT 31.875 277.273 Td /F1 9.8 Tf [(Other-Motor)] TJ ET 0.267 0.267 0.267 rg 470.152 287.128 110.723 0.750 re f 470.152 271.247 110.723 0.750 re f 470.152 271.247 0.750 16.631 re f 580.125 271.247 0.750 16.631 re f 0.271 0.267 0.267 rg BT 475.402 277.273 Td /F1 9.8 Tf [(1)] TJ ET BT 26.250 216.348 Td /F4 9.8 Tf [(Driving:)] TJ ET BT 63.086 216.348 Td /F1 9.8 Tf [( The most commonly endorsed day-to-day change was driving \(11/16\). Participants referred to concerns about doing )] TJ ET BT 26.250 204.444 Td /F1 9.8 Tf [(more than one thing at a time, being slower, and concerns about safety. For example, )] TJ ET BT 398.017 204.444 Td /F5 9.8 Tf [(I can only, kind of, do one thing at a time )] TJ ET BT 26.250 192.539 Td /F5 9.8 Tf [(now, I need to be alert to the driving solely; my reaction time is slower \(1\),)] TJ ET BT 343.788 192.539 Td /F1 9.8 Tf [( and )] TJ ET BT 365.472 192.539 Td /F5 9.8 Tf [(one of the kids was nervous of me driving. )] TJ ET BT 26.250 180.634 Td /F5 9.8 Tf [(Because of that I have said that I wont drive any of the grandkids \(2\).)] TJ ET BT 26.250 161.229 Td /F4 9.8 Tf [(Interactions:)] TJ ET BT 84.760 161.229 Td /F1 9.8 Tf [( When describing changes in interactions with others, participants described a variety of changes including lack of )] TJ ET BT 26.250 149.325 Td /F1 9.8 Tf [(interest, anxiety, and irritability with others. )] TJ ET BT 212.650 149.325 Td /F5 9.8 Tf [(Im, um, a little less patient, sometimes I have to watch myself, you know; I have to )] TJ ET BT 26.250 137.420 Td /F5 9.8 Tf [(watch the way I speak \(3\),)] TJ ET BT 139.506 137.420 Td /F1 9.8 Tf [( and )] TJ ET BT 161.190 137.420 Td /F5 9.8 Tf [(its not that I dont feel social, its just . . . I get lazy and I dont want to go out \(4\).)] TJ ET BT 26.250 118.015 Td /F4 9.8 Tf [(Household chores:)] TJ ET BT 114.556 118.015 Td /F1 9.8 Tf [( Respondents were aware they were not keeping up with their usual responsibilities, but described a lack of )] TJ ET BT 26.250 106.110 Td /F1 9.8 Tf [(interest or initiative. )] TJ ET BT 112.947 106.110 Td /F5 9.8 Tf [(I used to change the beds and now its not as often as I used to \(5\), You know, I could look at something, )] TJ ET BT 26.250 94.206 Td /F5 9.8 Tf [(and you know, realize it was dusty, but . . . for that to register in my head that I, you know, had to clean a whole house . . . I just )] TJ ET BT 26.250 82.301 Td /F5 9.8 Tf [(never thought about it \(6\),)] TJ ET BT 137.897 82.301 Td /F1 9.8 Tf [( and )] TJ ET BT 159.581 82.301 Td /F5 9.8 Tf [(its not important any more \(7\).)] TJ ET Q q 15.000 17.301 577.500 759.699 re W n 0.271 0.267 0.267 rg BT 26.250 767.476 Td /F5 9.8 Tf [(3. Please tell me about)] TJ ET BT 125.427 767.476 Td /F5 9.8 Tf [(shopping.)] TJ ET BT 167.703 767.476 Td /F5 9.8 Tf [( Do you shop for things like groceries, items for your home, yourself, your car?)] TJ ET BT 26.250 748.071 Td /F5 9.8 Tf [(4. Please tell me about)] TJ ET BT 125.427 748.071 Td /F5 9.8 Tf [(cooking and meals at home.)] TJ ET BT 247.361 748.071 Td /F5 9.8 Tf [( Do you ordinarily prepare meals at home?)] TJ ET BT 26.250 728.667 Td /F5 9.8 Tf [(5. Please tell me about using the)] TJ ET BT 167.703 728.667 Td /F5 9.8 Tf [(telephone.)] TJ ET BT 213.236 728.667 Td /F5 9.8 Tf [( Do you ordinarily make calls, answer the phone?)] TJ ET BT 26.250 709.262 Td /F5 9.8 Tf [(6. Please tell me about things you usually enjoy. Do you start these)] TJ ET BT 316.186 709.262 Td /F5 9.8 Tf [(hobbies)] TJ ET BT 350.330 709.262 Td /F5 9.8 Tf [( on your own? Do you enjoy them if someone else )] TJ ET BT 26.250 697.357 Td /F5 9.8 Tf [(gets you started or takes you where you can enjoy that activity, e.g., going to church, going fishing, bowling?)] TJ ET BT 26.250 677.952 Td /F5 9.8 Tf [(7. Please tell me about your ability to handle your)] TJ ET BT 239.229 677.952 Td /F5 9.8 Tf [( finances.)] TJ ET BT 280.959 677.952 Td /F5 9.8 Tf [( Do you ordinarily take care of these yourself?)] TJ ET BT 26.250 658.548 Td /F5 9.8 Tf [(8. Please tell me about)] TJ ET BT 125.427 658.548 Td /F5 9.8 Tf [(work.)] TJ ET BT 148.720 658.548 Td /F5 9.8 Tf [( Do you ordinarily work for pay; is this full time work?)] TJ ET BT 26.250 639.143 Td /F5 9.8 Tf [(9. Please tell me about being around, or)] TJ ET BT 199.137 639.143 Td /F5 9.8 Tf [(interacting)] TJ ET BT 244.114 639.143 Td /F5 9.8 Tf [( with, other people: In what areas do you see changes, e.g., avoid being )] TJ ET BT 26.250 627.238 Td /F5 9.8 Tf [(around other people, become irritated or impatient with people)] TJ ET BT 26.250 607.833 Td /F5 9.8 Tf [(10. Last question:)] TJ ET BT 103.216 607.833 Td /F5 9.8 Tf [(What else)] TJ ET BT 146.565 607.833 Td /F5 9.8 Tf [( would you like to tell me?)] TJ ET BT 26.250 588.429 Td /F4 9.8 Tf [(Analysis)] TJ ET BT 26.250 569.024 Td /F1 9.8 Tf [(Two authors followed qualitative descriptive analysis techniques )] TJ ET 0.267 0.267 0.267 rg BT 304.778 569.024 Td /F1 9.8 Tf [([16])] TJ ET 0.271 0.267 0.267 rg BT 321.041 569.024 Td /F1 9.8 Tf [( . The data were initially coded using NVivo 8 software )] TJ ET 0.267 0.267 0.267 rg BT 557.849 569.024 Td /F1 9.8 Tf [([17])] TJ ET 0.271 0.267 0.267 rg BT 26.250 557.119 Td /F1 9.8 Tf [(. Data were independently coded and reviewed until there was 100% agreement between the two authors.)] TJ ET BT 26.250 520.517 Td /F4 12.0 Tf [(Results)] TJ ET BT 26.250 500.562 Td /F1 9.8 Tf [(Fourteen of the 16 participants described one or more changes in performance of day-to-day tasks. Each participant reporting )] TJ ET BT 26.250 488.658 Td /F1 9.8 Tf [(changes endorsed from 1-7 areas of function \(Table 1\). One person who did not endorse any of the 9 topics in the interview )] TJ ET BT 26.250 476.753 Td /F1 9.8 Tf [(guide reported the presence of involuntary movements. Specific functional tasks and examples of statements are provided )] TJ ET BT 26.250 464.848 Td /F1 9.8 Tf [(below. Participants are identified by a number only for the purpose of reporting the data.)] TJ ET q 26.250 454.967 555.000 0.000 re W n Q 0.965 0.965 0.965 rg 26.250 431.560 555.000 23.408 re f 0.267 0.267 0.267 rg 0.267 0.267 0.267 RG 26.250 454.967 m 581.250 454.967 l 580.500 454.217 l 27.000 454.217 l f 581.250 454.967 m 581.250 431.560 l 580.500 431.560 l 580.500 454.217 l f 26.250 454.967 m 26.250 431.560 l 27.000 431.560 l 27.000 454.217 l f 0.271 0.267 0.267 rg BT 33.000 440.891 Td /F4 9.0 Tf [(Table 1.)] TJ ET BT 66.516 440.891 Td /F1 9.0 Tf [( Functional Changes \(N=16\))] TJ ET 1.000 1.000 1.000 rg 26.250 270.872 555.000 160.688 re f 0.965 0.965 0.965 rg 27.000 430.435 443.527 0.375 re f 0.267 0.267 0.267 rg 26.625 430.435 443.902 0.750 re f 26.625 430.060 0.750 1.125 re f 0.965 0.965 0.965 rg 470.527 430.435 109.973 0.375 re f 0.267 0.267 0.267 rg 470.527 430.435 110.348 0.750 re f 580.125 430.060 0.750 1.125 re f 26.625 430.060 444.277 0.750 re f 26.625 414.178 0.750 16.631 re f 0.271 0.267 0.267 rg BT 31.875 420.205 Td /F1 9.8 Tf [(Driving)] TJ ET 0.267 0.267 0.267 rg 470.152 430.060 110.723 0.750 re f 470.152 414.178 0.750 16.631 re f 580.125 414.178 0.750 16.631 re f 0.271 0.267 0.267 rg BT 475.402 420.205 Td /F1 9.8 Tf [(11)] TJ ET 0.267 0.267 0.267 rg 26.625 414.178 444.277 0.750 re f 26.625 398.297 0.750 16.631 re f 0.271 0.267 0.267 rg BT 31.875 404.323 Td /F1 9.8 Tf [(Interactions)] TJ ET 0.267 0.267 0.267 rg 470.152 414.178 110.723 0.750 re f 470.152 398.297 0.750 16.631 re f 580.125 398.297 0.750 16.631 re f 0.271 0.267 0.267 rg BT 475.402 404.323 Td /F1 9.8 Tf [(8)] TJ ET 0.267 0.267 0.267 rg 26.625 398.297 444.277 0.750 re f 26.625 382.416 0.750 16.631 re f 0.271 0.267 0.267 rg BT 31.875 388.442 Td /F1 9.8 Tf [(Household chores)] TJ ET 0.267 0.267 0.267 rg 470.152 398.297 110.723 0.750 re f 470.152 382.416 0.750 16.631 re f 580.125 382.416 0.750 16.631 re f 0.271 0.267 0.267 rg BT 475.402 388.442 Td /F1 9.8 Tf [(8)] TJ ET 0.267 0.267 0.267 rg 26.625 382.416 444.277 0.750 re f 26.625 366.535 0.750 16.631 re f 0.271 0.267 0.267 rg BT 31.875 372.561 Td /F1 9.8 Tf [(Telephone)] TJ ET 0.267 0.267 0.267 rg 470.152 382.416 110.723 0.750 re f 470.152 366.535 0.750 16.631 re f 580.125 366.535 0.750 16.631 re f 0.271 0.267 0.267 rg BT 475.402 372.561 Td /F1 9.8 Tf [(7)] TJ ET 0.267 0.267 0.267 rg 26.625 366.535 444.277 0.750 re f 26.625 350.653 0.750 16.631 re f 0.271 0.267 0.267 rg BT 31.875 356.680 Td /F1 9.8 Tf [(Shopping)] TJ ET 0.267 0.267 0.267 rg 470.152 366.535 110.723 0.750 re f 470.152 350.653 0.750 16.631 re f 580.125 350.653 0.750 16.631 re f 0.271 0.267 0.267 rg BT 475.402 356.680 Td /F1 9.8 Tf [(6)] TJ ET 0.267 0.267 0.267 rg 26.625 350.653 444.277 0.750 re f 26.625 334.772 0.750 16.631 re f 0.271 0.267 0.267 rg BT 31.875 340.798 Td /F1 9.8 Tf [(Finances)] TJ ET 0.267 0.267 0.267 rg 470.152 350.653 110.723 0.750 re f 470.152 334.772 0.750 16.631 re f 580.125 334.772 0.750 16.631 re f 0.271 0.267 0.267 rg BT 475.402 340.798 Td /F1 9.8 Tf [(5)] TJ ET 0.267 0.267 0.267 rg 26.625 334.772 444.277 0.750 re f 26.625 318.891 0.750 16.631 re f 0.271 0.267 0.267 rg BT 31.875 324.917 Td /F1 9.8 Tf [(Paid work)] TJ ET 0.267 0.267 0.267 rg 470.152 334.772 110.723 0.750 re f 470.152 318.891 0.750 16.631 re f 580.125 318.891 0.750 16.631 re f 0.271 0.267 0.267 rg BT 475.402 324.917 Td /F1 9.8 Tf [(4)] TJ ET 0.267 0.267 0.267 rg 26.625 318.891 444.277 0.750 re f 26.625 303.010 0.750 16.631 re f 0.271 0.267 0.267 rg BT 31.875 309.036 Td /F1 9.8 Tf [(Cooking)] TJ ET 0.267 0.267 0.267 rg 470.152 318.891 110.723 0.750 re f 470.152 303.010 0.750 16.631 re f 580.125 303.010 0.750 16.631 re f 0.271 0.267 0.267 rg BT 475.402 309.036 Td /F1 9.8 Tf [(4)] TJ ET 0.267 0.267 0.267 rg 26.625 303.010 444.277 0.750 re f 26.625 287.128 0.750 16.631 re f 0.271 0.267 0.267 rg BT 31.875 293.155 Td /F1 9.8 Tf [(Hobbies)] TJ ET 0.267 0.267 0.267 rg 470.152 303.010 110.723 0.750 re f 470.152 287.128 0.750 16.631 re f 580.125 287.128 0.750 16.631 re f 0.271 0.267 0.267 rg BT 475.402 293.155 Td /F1 9.8 Tf [(1)] TJ ET 0.267 0.267 0.267 rg 26.625 287.128 444.277 0.750 re f 26.625 271.247 444.277 0.750 re f 26.625 271.247 0.750 16.631 re f 0.271 0.267 0.267 rg BT 31.875 277.273 Td /F1 9.8 Tf [(Other-Motor)] TJ ET 0.267 0.267 0.267 rg 470.152 287.128 110.723 0.750 re f 470.152 271.247 110.723 0.750 re f 470.152 271.247 0.750 16.631 re f 580.125 271.247 0.750 16.631 re f 0.271 0.267 0.267 rg BT 475.402 277.273 Td /F1 9.8 Tf [(1)] TJ ET BT 26.250 216.348 Td /F4 9.8 Tf [(Driving:)] TJ ET BT 63.086 216.348 Td /F1 9.8 Tf [( The most commonly endorsed day-to-day change was driving \(11/16\). Participants referred to concerns about doing )] TJ ET BT 26.250 204.444 Td /F1 9.8 Tf [(more than one thing at a time, being slower, and concerns about safety. For example, )] TJ ET BT 398.017 204.444 Td /F5 9.8 Tf [(I can only, kind of, do one thing at a time )] TJ ET BT 26.250 192.539 Td /F5 9.8 Tf [(now, I need to be alert to the driving solely; my reaction time is slower \(1\),)] TJ ET BT 343.788 192.539 Td /F1 9.8 Tf [( and )] TJ ET BT 365.472 192.539 Td /F5 9.8 Tf [(one of the kids was nervous of me driving. )] TJ ET BT 26.250 180.634 Td /F5 9.8 Tf [(Because of that I have said that I wont drive any of the grandkids \(2\).)] TJ ET BT 26.250 161.229 Td /F4 9.8 Tf [(Interactions:)] TJ ET BT 84.760 161.229 Td /F1 9.8 Tf [( When describing changes in interactions with others, participants described a variety of changes including lack of )] TJ ET BT 26.250 149.325 Td /F1 9.8 Tf [(interest, anxiety, and irritability with others. )] TJ ET BT 212.650 149.325 Td /F5 9.8 Tf [(Im, um, a little less patient, sometimes I have to watch myself, you know; I have to )] TJ ET BT 26.250 137.420 Td /F5 9.8 Tf [(watch the way I speak \(3\),)] TJ ET BT 139.506 137.420 Td /F1 9.8 Tf [( and )] TJ ET BT 161.190 137.420 Td /F5 9.8 Tf [(its not that I dont feel social, its just . . . I get lazy and I dont want to go out \(4\).)] TJ ET BT 26.250 118.015 Td /F4 9.8 Tf [(Household chores:)] TJ ET BT 114.556 118.015 Td /F1 9.8 Tf [( Respondents were aware they were not keeping up with their usual responsibilities, but described a lack of )] TJ ET BT 26.250 106.110 Td /F1 9.8 Tf [(interest or initiative. )] TJ ET BT 112.947 106.110 Td /F5 9.8 Tf [(I used to change the beds and now its not as often as I used to \(5\), You know, I could look at something, )] TJ ET BT 26.250 94.206 Td /F5 9.8 Tf [(and you know, realize it was dusty, but . . . for that to register in my head that I, you know, had to clean a whole house . . . I just )] TJ ET BT 26.250 82.301 Td /F5 9.8 Tf [(never thought about it \(6\),)] TJ ET BT 137.897 82.301 Td /F1 9.8 Tf [( and )] TJ ET BT 159.581 82.301 Td /F5 9.8 Tf [(its not important any more \(7\).)] TJ ET Q q 15.000 17.301 577.500 759.699 re W n 0.271 0.267 0.267 rg BT 26.250 767.476 Td /F5 9.8 Tf [(3. Please tell me about)] TJ ET BT 125.427 767.476 Td /F5 9.8 Tf [(shopping.)] TJ ET BT 167.703 767.476 Td /F5 9.8 Tf [( Do you shop for things like groceries, items for your home, yourself, your car?)] TJ ET BT 26.250 748.071 Td /F5 9.8 Tf [(4. Please tell me about)] TJ ET BT 125.427 748.071 Td /F5 9.8 Tf [(cooking and meals at home.)] TJ ET BT 247.361 748.071 Td /F5 9.8 Tf [( Do you ordinarily prepare meals at home?)] TJ ET BT 26.250 728.667 Td /F5 9.8 Tf [(5. Please tell me about using the)] TJ ET BT 167.703 728.667 Td /F5 9.8 Tf [(telephone.)] TJ ET BT 213.236 728.667 Td /F5 9.8 Tf [( Do you ordinarily make calls, answer the phone?)] TJ ET BT 26.250 709.262 Td /F5 9.8 Tf [(6. Please tell me about things you usually enjoy. Do you start these)] TJ ET BT 316.186 709.262 Td /F5 9.8 Tf [(hobbies)] TJ ET BT 350.330 709.262 Td /F5 9.8 Tf [( on your own? Do you enjoy them if someone else )] TJ ET BT 26.250 697.357 Td /F5 9.8 Tf [(gets you started or takes you where you can enjoy that activity, e.g., going to church, going fishing, bowling?)] TJ ET BT 26.250 677.952 Td /F5 9.8 Tf [(7. Please tell me about your ability to handle your)] TJ ET BT 239.229 677.952 Td /F5 9.8 Tf [( finances.)] TJ ET BT 280.959 677.952 Td /F5 9.8 Tf [( Do you ordinarily take care of these yourself?)] TJ ET BT 26.250 658.548 Td /F5 9.8 Tf [(8. Please tell me about)] TJ ET BT 125.427 658.548 Td /F5 9.8 Tf [(work.)] TJ ET BT 148.720 658.548 Td /F5 9.8 Tf [( Do you ordinarily work for pay; is this full time work?)] TJ ET BT 26.250 639.143 Td /F5 9.8 Tf [(9. Please tell me about being around, or)] TJ ET BT 199.137 639.143 Td /F5 9.8 Tf [(interacting)] TJ ET BT 244.114 639.143 Td /F5 9.8 Tf [( with, other people: In what areas do you see changes, e.g., avoid being )] TJ ET BT 26.250 627.238 Td /F5 9.8 Tf [(around other people, become irritated or impatient with people)] TJ ET BT 26.250 607.833 Td /F5 9.8 Tf [(10. Last question:)] TJ ET BT 103.216 607.833 Td /F5 9.8 Tf [(What else)] TJ ET BT 146.565 607.833 Td /F5 9.8 Tf [( would you like to tell me?)] TJ ET BT 26.250 588.429 Td /F4 9.8 Tf [(Analysis)] TJ ET BT 26.250 569.024 Td /F1 9.8 Tf [(Two authors followed qualitative descriptive analysis techniques )] TJ ET 0.267 0.267 0.267 rg BT 304.778 569.024 Td /F1 9.8 Tf [([16])] TJ ET 0.271 0.267 0.267 rg BT 321.041 569.024 Td /F1 9.8 Tf [( . The data were initially coded using NVivo 8 software )] TJ ET 0.267 0.267 0.267 rg BT 557.849 569.024 Td /F1 9.8 Tf [([17])] TJ ET 0.271 0.267 0.267 rg BT 26.250 557.119 Td /F1 9.8 Tf [(. Data were independently coded and reviewed until there was 100% agreement between the two authors.)] TJ ET BT 26.250 520.517 Td /F4 12.0 Tf [(Results)] TJ ET BT 26.250 500.562 Td /F1 9.8 Tf [(Fourteen of the 16 participants described one or more changes in performance of day-to-day tasks. Each participant reporting )] TJ ET BT 26.250 488.658 Td /F1 9.8 Tf [(changes endorsed from 1-7 areas of function \(Table 1\). One person who did not endorse any of the 9 topics in the interview )] TJ ET BT 26.250 476.753 Td /F1 9.8 Tf [(guide reported the presence of involuntary movements. Specific functional tasks and examples of statements are provided )] TJ ET BT 26.250 464.848 Td /F1 9.8 Tf [(below. Participants are identified by a number only for the purpose of reporting the data.)] TJ ET q 26.250 454.967 555.000 0.000 re W n Q 0.965 0.965 0.965 rg 26.250 431.560 555.000 23.408 re f 0.267 0.267 0.267 rg 0.267 0.267 0.267 RG 26.250 454.967 m 581.250 454.967 l 580.500 454.217 l 27.000 454.217 l f 581.250 454.967 m 581.250 431.560 l 580.500 431.560 l 580.500 454.217 l f 26.250 454.967 m 26.250 431.560 l 27.000 431.560 l 27.000 454.217 l f 0.271 0.267 0.267 rg BT 33.000 440.891 Td /F4 9.0 Tf [(Table 1.)] TJ ET BT 66.516 440.891 Td /F1 9.0 Tf [( Functional Changes \(N=16\))] TJ ET 1.000 1.000 1.000 rg 26.250 270.872 555.000 160.688 re f 0.965 0.965 0.965 rg 27.000 430.435 443.527 0.375 re f 0.267 0.267 0.267 rg 26.625 430.435 443.902 0.750 re f 26.625 430.060 0.750 1.125 re f 0.965 0.965 0.965 rg 470.527 430.435 109.973 0.375 re f 0.267 0.267 0.267 rg 470.527 430.435 110.348 0.750 re f 580.125 430.060 0.750 1.125 re f 26.625 430.060 444.277 0.750 re f 26.625 414.178 0.750 16.631 re f 0.271 0.267 0.267 rg BT 31.875 420.205 Td /F1 9.8 Tf [(Driving)] TJ ET 0.267 0.267 0.267 rg 470.152 430.060 110.723 0.750 re f 470.152 414.178 0.750 16.631 re f 580.125 414.178 0.750 16.631 re f 0.271 0.267 0.267 rg BT 475.402 420.205 Td /F1 9.8 Tf [(11)] TJ ET 0.267 0.267 0.267 rg 26.625 414.178 444.277 0.750 re f 26.625 398.297 0.750 16.631 re f 0.271 0.267 0.267 rg BT 31.875 404.323 Td /F1 9.8 Tf [(Interactions)] TJ ET 0.267 0.267 0.267 rg 470.152 414.178 110.723 0.750 re f 470.152 398.297 0.750 16.631 re f 580.125 398.297 0.750 16.631 re f 0.271 0.267 0.267 rg BT 475.402 404.323 Td /F1 9.8 Tf [(8)] TJ ET 0.267 0.267 0.267 rg 26.625 398.297 444.277 0.750 re f 26.625 382.416 0.750 16.631 re f 0.271 0.267 0.267 rg BT 31.875 388.442 Td /F1 9.8 Tf [(Household chores)] TJ ET 0.267 0.267 0.267 rg 470.152 398.297 110.723 0.750 re f 470.152 382.416 0.750 16.631 re f 580.125 382.416 0.750 16.631 re f 0.271 0.267 0.267 rg BT 475.402 388.442 Td /F1 9.8 Tf [(8)] TJ ET 0.267 0.267 0.267 rg 26.625 382.416 444.277 0.750 re f 26.625 366.535 0.750 16.631 re f 0.271 0.267 0.267 rg BT 31.875 372.561 Td /F1 9.8 Tf [(Telephone)] TJ ET 0.267 0.267 0.267 rg 470.152 382.416 110.723 0.750 re f 470.152 366.535 0.750 16.631 re f 580.125 366.535 0.750 16.631 re f 0.271 0.267 0.267 rg BT 475.402 372.561 Td /F1 9.8 Tf [(7)] TJ ET 0.267 0.267 0.267 rg 26.625 366.535 444.277 0.750 re f 26.625 350.653 0.750 16.631 re f 0.271 0.267 0.267 rg BT 31.875 356.680 Td /F1 9.8 Tf [(Shopping)] TJ ET 0.267 0.267 0.267 rg 470.152 366.535 110.723 0.750 re f 470.152 350.653 0.750 16.631 re f 580.125 350.653 0.750 16.631 re f 0.271 0.267 0.267 rg BT 475.402 356.680 Td /F1 9.8 Tf [(6)] TJ ET 0.267 0.267 0.267 rg 26.625 350.653 444.277 0.750 re f 26.625 334.772 0.750 16.631 re f 0.271 0.267 0.267 rg BT 31.875 340.798 Td /F1 9.8 Tf [(Finances)] TJ ET 0.267 0.267 0.267 rg 470.152 350.653 110.723 0.750 re f 470.152 334.772 0.750 16.631 re f 580.125 334.772 0.750 16.631 re f 0.271 0.267 0.267 rg BT 475.402 340.798 Td /F1 9.8 Tf [(5)] TJ ET 0.267 0.267 0.267 rg 26.625 334.772 444.277 0.750 re f 26.625 318.891 0.750 16.631 re f 0.271 0.267 0.267 rg BT 31.875 324.917 Td /F1 9.8 Tf [(Paid work)] TJ ET 0.267 0.267 0.267 rg 470.152 334.772 110.723 0.750 re f 470.152 318.891 0.750 16.631 re f 580.125 318.891 0.750 16.631 re f 0.271 0.267 0.267 rg BT 475.402 324.917 Td /F1 9.8 Tf [(4)] TJ ET 0.267 0.267 0.267 rg 26.625 318.891 444.277 0.750 re f 26.625 303.010 0.750 16.631 re f 0.271 0.267 0.267 rg BT 31.875 309.036 Td /F1 9.8 Tf [(Cooking)] TJ ET 0.267 0.267 0.267 rg 470.152 318.891 110.723 0.750 re f 470.152 303.010 0.750 16.631 re f 580.125 303.010 0.750 16.631 re f 0.271 0.267 0.267 rg BT 475.402 309.036 Td /F1 9.8 Tf [(4)] TJ ET 0.267 0.267 0.267 rg 26.625 303.010 444.277 0.750 re f 26.625 287.128 0.750 16.631 re f 0.271 0.267 0.267 rg BT 31.875 293.155 Td /F1 9.8 Tf [(Hobbies)] TJ ET 0.267 0.267 0.267 rg 470.152 303.010 110.723 0.750 re f 470.152 287.128 0.750 16.631 re f 580.125 287.128 0.750 16.631 re f 0.271 0.267 0.267 rg BT 475.402 293.155 Td /F1 9.8 Tf [(1)] TJ ET 0.267 0.267 0.267 rg 26.625 287.128 444.277 0.750 re f 26.625 271.247 444.277 0.750 re f 26.625 271.247 0.750 16.631 re f 0.271 0.267 0.267 rg BT 31.875 277.273 Td /F1 9.8 Tf [(Other-Motor)] TJ ET 0.267 0.267 0.267 rg 470.152 287.128 110.723 0.750 re f 470.152 271.247 110.723 0.750 re f 470.152 271.247 0.750 16.631 re f 580.125 271.247 0.750 16.631 re f 0.271 0.267 0.267 rg BT 475.402 277.273 Td /F1 9.8 Tf [(1)] TJ ET BT 26.250 216.348 Td /F4 9.8 Tf [(Driving:)] TJ ET BT 63.086 216.348 Td /F1 9.8 Tf [( The most commonly endorsed day-to-day change was driving \(11/16\). Participants referred to concerns about doing )] TJ ET BT 26.250 204.444 Td /F1 9.8 Tf [(more than one thing at a time, being slower, and concerns about safety. For example, )] TJ ET BT 398.017 204.444 Td /F5 9.8 Tf [(I can only, kind of, do one thing at a time )] TJ ET BT 26.250 192.539 Td /F5 9.8 Tf [(now, I need to be alert to the driving solely; my reaction time is slower \(1\),)] TJ ET BT 343.788 192.539 Td /F1 9.8 Tf [( and )] TJ ET BT 365.472 192.539 Td /F5 9.8 Tf [(one of the kids was nervous of me driving. )] TJ ET BT 26.250 180.634 Td /F5 9.8 Tf [(Because of that I have said that I wont drive any of the grandkids \(2\).)] TJ ET BT 26.250 161.229 Td /F4 9.8 Tf [(Interactions:)] TJ ET BT 84.760 161.229 Td /F1 9.8 Tf [( When describing changes in interactions with others, participants described a variety of changes including lack of )] TJ ET BT 26.250 149.325 Td /F1 9.8 Tf [(interest, anxiety, and irritability with others. )] TJ ET BT 212.650 149.325 Td /F5 9.8 Tf [(Im, um, a little less patient, sometimes I have to watch myself, you know; I have to )] TJ ET BT 26.250 137.420 Td /F5 9.8 Tf [(watch the way I speak \(3\),)] TJ ET BT 139.506 137.420 Td /F1 9.8 Tf [( and )] TJ ET BT 161.190 137.420 Td /F5 9.8 Tf [(its not that I dont feel social, its just . . . I get lazy and I dont want to go out \(4\).)] TJ ET BT 26.250 118.015 Td /F4 9.8 Tf [(Household chores:)] TJ ET BT 114.556 118.015 Td /F1 9.8 Tf [( Respondents were aware they were not keeping up with their usual responsibilities, but described a lack of )] TJ ET BT 26.250 106.110 Td /F1 9.8 Tf [(interest or initiative. )] TJ ET BT 112.947 106.110 Td /F5 9.8 Tf [(I used to change the beds and now its not as often as I used to \(5\), You know, I could look at something, )] TJ ET BT 26.250 94.206 Td /F5 9.8 Tf [(and you know, realize it was dusty, but . . . for that to register in my head that I, you know, had to clean a whole house . . . I just )] TJ ET BT 26.250 82.301 Td /F5 9.8 Tf [(never thought about it \(6\),)] TJ ET BT 137.897 82.301 Td /F1 9.8 Tf [( and )] TJ ET BT 159.581 82.301 Td /F5 9.8 Tf [(its not important any more \(7\).)] 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 Huntington Disease)] TJ ET Q endstream endobj 193 0 obj << /Type /Annot /Subtype /Link /A 194 0 R /Border [0 0 0] /H /I /Rect [ 304.7783 568.1221 321.0412 578.0427 ] >> endobj 194 0 obj << /Type /Action >> endobj 195 0 obj << /Type /Annot /Subtype /Link /A 196 0 R /Border [0 0 0] /H /I /Rect [ 557.8492 568.1221 574.1123 578.0427 ] >> endobj 196 0 obj << /Type /Action >> endobj 197 0 obj << /Type /Annot /Subtype /Link /A 198 0 R /Border [0 0 0] /H /I /Rect [ 304.7783 568.1221 321.0412 578.0427 ] >> endobj 198 0 obj << /Type /Action >> endobj 199 0 obj << /Type /Annot /Subtype /Link /A 200 0 R /Border [0 0 0] /H /I /Rect [ 557.8492 568.1221 574.1123 578.0427 ] >> endobj 200 0 obj << /Type /Action >> endobj 201 0 obj << /Type /Annot /Subtype /Link /A 202 0 R /Border [0 0 0] /H /I /Rect [ 304.7783 568.1221 321.0412 578.0427 ] >> endobj 202 0 obj << /Type /Action >> endobj 203 0 obj << /Type /Annot /Subtype /Link /A 204 0 R /Border [0 0 0] /H /I /Rect [ 557.8492 568.1221 574.1123 578.0427 ] >> endobj 204 0 obj << /Type /Action >> endobj 205 0 obj << /Type /Page /Parent 3 0 R /Annots [ 207 0 R 209 0 R 211 0 R 213 0 R 215 0 R 217 0 R 219 0 R 221 0 R 223 0 R 225 0 R 227 0 R 229 0 R 231 0 R 233 0 R 235 0 R ] /Contents 206 0 R >> endobj 206 0 obj << /Length 27385 >> stream 0.271 0.267 0.267 rg 0.267 0.267 0.267 RG q 15.000 29.363 577.500 747.637 re W n 0.271 0.267 0.267 rg BT 26.250 767.476 Td /F4 9.8 Tf [(Telephone:)] TJ ET BT 78.257 767.476 Td /F1 9.8 Tf [( Respondents were reluctant to respond on the telephone when they werent prepared, and were selective when )] TJ ET BT 26.250 755.571 Td /F1 9.8 Tf [(they did answer the telephone. )] TJ ET BT 161.746 755.571 Td /F5 9.8 Tf [(Only if I know about it in advance. Spur of the moment . . . forget it . . . its like because it was )] TJ ET BT 26.250 743.667 Td /F5 9.8 Tf [(unexpected . . . my brains not working that way \(7\),)] TJ ET BT 248.969 743.667 Td /F1 9.8 Tf [( and )] TJ ET BT 270.653 743.667 Td /F5 9.8 Tf [(I have it print out on my TV so I it tells me who it is . . . I dont want to )] TJ ET BT 26.250 731.762 Td /F5 9.8 Tf [(get into the conversation . . . you just dont want to . . . initiate it \(8\).)] TJ ET BT 26.250 712.357 Td /F4 9.8 Tf [(Shopping:)] TJ ET BT 74.454 712.357 Td /F1 9.8 Tf [( Skills needed for shopping included being able to remember where to go for needed items, as well as what the )] TJ ET BT 26.250 700.452 Td /F1 9.8 Tf [(items are. )] TJ ET BT 71.763 700.452 Td /F5 9.8 Tf [(I make my list, and write it down . . . to make sure I remember to stop \(8\),)] TJ ET BT 387.127 700.452 Td /F1 9.8 Tf [( and )] TJ ET BT 408.811 700.452 Td /F5 9.8 Tf [(I forget things so I usually need to have )] TJ ET BT 26.250 688.548 Td /F5 9.8 Tf [(a list for everything Im going to need \(1\).)] TJ ET BT 26.250 669.143 Td /F4 9.8 Tf [(Finances:)] TJ ET BT 71.763 669.143 Td /F1 9.8 Tf [( Not being able to remember to take care of finances was mentioned by several; others also noted that they could not )] TJ ET BT 26.250 657.238 Td /F1 9.8 Tf [(keep up with the processes of calculating and managing them. )] TJ ET BT 298.304 657.238 Td /F5 9.8 Tf [(Anything concerning the bills, or anything like that, I cant )] TJ ET BT 26.250 645.333 Td /F5 9.8 Tf [(remember \(3\), uh, I just kind of dont do it, I mean, I dont know what happened \(6\), Im not very good at it, you know, adding in )] TJ ET BT 26.250 633.429 Td /F5 9.8 Tf [(my head anymore \(5\).)] TJ ET BT 26.250 614.024 Td /F4 9.8 Tf [(Paid work:)] TJ ET BT 75.556 614.024 Td /F1 9.8 Tf [( All respondents who left paid employment had done so voluntarily. Some stated they were able to retire due to )] TJ ET BT 26.250 602.119 Td /F1 9.8 Tf [(having reached the requirements for full retirement, or for family reasons. Others specifically addressed an inability to do their )] TJ ET BT 26.250 590.214 Td /F1 9.8 Tf [(jobs. )] TJ ET BT 49.552 590.214 Td /F5 9.8 Tf [(I had to leave my job because . . . I just couldnt work, like I just couldnt . . . mentally . . . I couldnt do it \(3\). I was falling )] TJ ET BT 26.250 578.310 Td /F5 9.8 Tf [(behind \(6\).)] TJ ET BT 26.250 558.905 Td /F4 9.8 Tf [(Cooking:)] TJ ET BT 68.497 558.905 Td /F1 9.8 Tf [( Multiple demands in planning and executing preparing a meal were difficult for some participants. )] TJ ET BT 492.261 558.905 Td /F5 9.8 Tf [(I think I make more )] TJ ET BT 26.250 547.000 Td /F5 9.8 Tf [(of a mess . . . But for the most part its ok; it takes me longer to clean up . . . I just forget to do things \(4\).)] TJ ET BT 26.250 527.595 Td /F4 9.8 Tf [(Hobbies and other topics:)] TJ ET BT 146.516 527.595 Td /F1 9.8 Tf [( When asked about changes in hobbies or leisure activities, none of the respondents reported )] TJ ET BT 26.250 515.691 Td /F1 9.8 Tf [(changes that were related to having prodromal HD. When asked if there were other things they had noticed, comments were )] TJ ET BT 26.250 503.786 Td /F1 9.8 Tf [(offered about motor skills. )] TJ ET BT 140.588 503.786 Td /F5 9.8 Tf [(Oh God, thats bad too; I walk into walls \(7\), I guess what you call the involuntary movements . . . I )] TJ ET BT 26.250 491.881 Td /F5 9.8 Tf [(definitely feel that it doesnt mean it makes any changes in your ability to do things . . . its just something you have noticed over )] TJ ET BT 26.250 479.976 Td /F5 9.8 Tf [(time, thats all \(9\).)] TJ ET BT 26.250 443.374 Td /F4 12.0 Tf [(Comments about Functional Changes)] TJ ET BT 26.250 423.420 Td /F1 9.8 Tf [(In responding to queries regarding potential changes in ability to carry out day-to-day tasks in specific areas, all respondents )] TJ ET BT 26.250 411.515 Td /F1 9.8 Tf [(provided information on factors that, they believed, made it difficult to do these tasks. These factors ranged from emotional to )] TJ ET BT 26.250 399.610 Td /F1 9.8 Tf [(cognitive to physical stamina topics.)] TJ ET BT 26.250 380.205 Td /F4 9.8 Tf [(Apathy/Fatigue:)] TJ ET BT 99.921 380.205 Td /F5 9.8 Tf [(I get really tired . . . Its not so much a physical thing; its a, like in your mind \(10\). I dont have the excitement )] TJ ET BT 26.250 368.301 Td /F5 9.8 Tf [(part of doing some things; its just not there \(11\).)] TJ ET BT 26.250 348.896 Td /F4 9.8 Tf [(Cognition:)] TJ ET BT 74.990 348.896 Td /F5 9.8 Tf [(Part of my trade was . . . always learning stuff; I couldnt learn . . . I couldnt remember anything anymore \(4\); )] TJ ET BT 26.250 336.991 Td /F5 9.8 Tf [(Memoryits just gone. Like my short-term memory \(3\).)] TJ ET BT 26.250 317.586 Td /F4 9.8 Tf [(Irritability:)] TJ ET BT 73.928 317.586 Td /F5 9.8 Tf [(I always seem to have that real quick to anger \(6\). Im a little short, a little cranky \(12\).)] TJ ET BT 26.250 280.984 Td /F4 12.0 Tf [(Discussion)] TJ ET BT 26.250 261.030 Td /F1 9.8 Tf [(This study examined self-reports of losses of abilities to perform day-to-day tasks in a small cohort of people in the prodromal )] TJ ET BT 26.250 249.125 Td /F1 9.8 Tf [(HD or very early phase of HD and for whom scores on the UHRDS motor scale indicated a significant increase of motor decline. )] TJ ET BT 26.250 237.220 Td /F1 9.8 Tf [(Findings indicate that changes in day-to-day task function vary in prodromal HD and those recently diagnosed with HD, but that )] TJ ET BT 26.250 225.315 Td /F1 9.8 Tf [(when changes are experienced, they are more likely to be in the domains of tasks that require multiple cognitive, motor, and )] TJ ET BT 26.250 213.411 Td /F1 9.8 Tf [(behavioral abilities. Driving is a good illustration of this because it is an activity that requires multiple domain skills and was the )] TJ ET BT 26.250 201.506 Td /F1 9.8 Tf [(most frequently mentioned area of functional difficulty in this sample. Although few reports focus on components of day-to-day )] TJ ET BT 26.250 189.601 Td /F1 9.8 Tf [(function in prodromal HD or early HD, the range of topics is consistent with those reported with less sensitive measures, )] TJ ET BT 26.250 177.696 Td /F1 9.8 Tf [(specifically that of employment and managing finances)] TJ ET 0.267 0.267 0.267 rg BT 262.522 177.696 Td /F1 9.8 Tf [( [2])] TJ ET 0.271 0.267 0.267 rg BT 276.074 177.696 Td /F1 9.8 Tf [( , which are endorsed by this cohort. In a study of changes in people )] TJ ET BT 26.250 165.792 Td /F1 9.8 Tf [(with prodromal HD over a 12 month period, changes in function as measured by the TFC are reported to show greater change )] TJ ET BT 26.250 153.887 Td /F1 9.8 Tf [(than controls, but this did not reach statistical significance )] TJ ET 0.267 0.267 0.267 rg BT 277.156 153.887 Td /F1 9.8 Tf [([18])] TJ ET 0.271 0.267 0.267 rg BT 293.419 153.887 Td /F1 9.8 Tf [( .)] TJ ET BT 26.250 134.482 Td /F1 9.8 Tf [(A potential limitation of this study includes the possibility of early lack of insight that is a component of HD )] TJ ET 0.267 0.267 0.267 rg BT 482.531 134.482 Td /F1 9.8 Tf [([19])] TJ ET 0.271 0.267 0.267 rg BT 498.793 134.482 Td /F1 9.8 Tf [( that has also )] TJ ET BT 26.250 122.577 Td /F1 9.8 Tf [(been found in persons with prodromal HD. As people with prodromal HD approached diagnosis, increasing discrepancies )] TJ ET BT 26.250 110.673 Td /F1 9.8 Tf [(between self-ratings and companion ratings of apathy, disinhibition, and executive function have been documented )] TJ ET 0.267 0.267 0.267 rg BT 523.763 110.673 Td /F1 9.8 Tf [([20])] TJ ET 0.271 0.267 0.267 rg BT 540.026 110.673 Td /F1 9.8 Tf [( . On the )] TJ ET BT 26.250 98.768 Td /F1 9.8 Tf [(other hand, self-report of cognitive impairment has been demonstrated to be a reliable indicator of mild cognitive impairment in )] TJ ET BT 26.250 86.863 Td /F1 9.8 Tf [(studies of people in early stages of dementia )] TJ ET 0.267 0.267 0.267 rg BT 221.893 86.863 Td /F1 9.8 Tf [([21] [22])] TJ ET 0.271 0.267 0.267 rg BT 257.130 86.863 Td /F1 9.8 Tf [( .)] TJ ET BT 26.250 67.458 Td /F1 9.8 Tf [(These findings suggest that day-to-day function may be impaired in some domains during the prodromal HD and recently )] TJ ET BT 26.250 55.554 Td /F1 9.8 Tf [(diagnosed period, and that measures to document function must encompass the range of domains likely to be affected in )] TJ ET BT 26.250 43.649 Td /F1 9.8 Tf [(prodromal HD. Data from these interviews were used in the development of items to assess day-to-day functioning by FuRST-)] TJ ET Q q 15.000 29.363 577.500 747.637 re W n 0.271 0.267 0.267 rg BT 26.250 767.476 Td /F4 9.8 Tf [(Telephone:)] TJ ET BT 78.257 767.476 Td /F1 9.8 Tf [( Respondents were reluctant to respond on the telephone when they werent prepared, and were selective when )] TJ ET BT 26.250 755.571 Td /F1 9.8 Tf [(they did answer the telephone. )] TJ ET BT 161.746 755.571 Td /F5 9.8 Tf [(Only if I know about it in advance. Spur of the moment . . . forget it . . . its like because it was )] TJ ET BT 26.250 743.667 Td /F5 9.8 Tf [(unexpected . . . my brains not working that way \(7\),)] TJ ET BT 248.969 743.667 Td /F1 9.8 Tf [( and )] TJ ET BT 270.653 743.667 Td /F5 9.8 Tf [(I have it print out on my TV so I it tells me who it is . . . I dont want to )] TJ ET BT 26.250 731.762 Td /F5 9.8 Tf [(get into the conversation . . . you just dont want to . . . initiate it \(8\).)] TJ ET BT 26.250 712.357 Td /F4 9.8 Tf [(Shopping:)] TJ ET BT 74.454 712.357 Td /F1 9.8 Tf [( Skills needed for shopping included being able to remember where to go for needed items, as well as what the )] TJ ET BT 26.250 700.452 Td /F1 9.8 Tf [(items are. )] TJ ET BT 71.763 700.452 Td /F5 9.8 Tf [(I make my list, and write it down . . . to make sure I remember to stop \(8\),)] TJ ET BT 387.127 700.452 Td /F1 9.8 Tf [( and )] TJ ET BT 408.811 700.452 Td /F5 9.8 Tf [(I forget things so I usually need to have )] TJ ET BT 26.250 688.548 Td /F5 9.8 Tf [(a list for everything Im going to need \(1\).)] TJ ET BT 26.250 669.143 Td /F4 9.8 Tf [(Finances:)] TJ ET BT 71.763 669.143 Td /F1 9.8 Tf [( Not being able to remember to take care of finances was mentioned by several; others also noted that they could not )] TJ ET BT 26.250 657.238 Td /F1 9.8 Tf [(keep up with the processes of calculating and managing them. )] TJ ET BT 298.304 657.238 Td /F5 9.8 Tf [(Anything concerning the bills, or anything like that, I cant )] TJ ET BT 26.250 645.333 Td /F5 9.8 Tf [(remember \(3\), uh, I just kind of dont do it, I mean, I dont know what happened \(6\), Im not very good at it, you know, adding in )] TJ ET BT 26.250 633.429 Td /F5 9.8 Tf [(my head anymore \(5\).)] TJ ET BT 26.250 614.024 Td /F4 9.8 Tf [(Paid work:)] TJ ET BT 75.556 614.024 Td /F1 9.8 Tf [( All respondents who left paid employment had done so voluntarily. Some stated they were able to retire due to )] TJ ET BT 26.250 602.119 Td /F1 9.8 Tf [(having reached the requirements for full retirement, or for family reasons. Others specifically addressed an inability to do their )] TJ ET BT 26.250 590.214 Td /F1 9.8 Tf [(jobs. )] TJ ET BT 49.552 590.214 Td /F5 9.8 Tf [(I had to leave my job because . . . I just couldnt work, like I just couldnt . . . mentally . . . I couldnt do it \(3\). I was falling )] TJ ET BT 26.250 578.310 Td /F5 9.8 Tf [(behind \(6\).)] TJ ET BT 26.250 558.905 Td /F4 9.8 Tf [(Cooking:)] TJ ET BT 68.497 558.905 Td /F1 9.8 Tf [( Multiple demands in planning and executing preparing a meal were difficult for some participants. )] TJ ET BT 492.261 558.905 Td /F5 9.8 Tf [(I think I make more )] TJ ET BT 26.250 547.000 Td /F5 9.8 Tf [(of a mess . . . But for the most part its ok; it takes me longer to clean up . . . I just forget to do things \(4\).)] TJ ET BT 26.250 527.595 Td /F4 9.8 Tf [(Hobbies and other topics:)] TJ ET BT 146.516 527.595 Td /F1 9.8 Tf [( When asked about changes in hobbies or leisure activities, none of the respondents reported )] TJ ET BT 26.250 515.691 Td /F1 9.8 Tf [(changes that were related to having prodromal HD. When asked if there were other things they had noticed, comments were )] TJ ET BT 26.250 503.786 Td /F1 9.8 Tf [(offered about motor skills. )] TJ ET BT 140.588 503.786 Td /F5 9.8 Tf [(Oh God, thats bad too; I walk into walls \(7\), I guess what you call the involuntary movements . . . I )] TJ ET BT 26.250 491.881 Td /F5 9.8 Tf [(definitely feel that it doesnt mean it makes any changes in your ability to do things . . . its just something you have noticed over )] TJ ET BT 26.250 479.976 Td /F5 9.8 Tf [(time, thats all \(9\).)] TJ ET BT 26.250 443.374 Td /F4 12.0 Tf [(Comments about Functional Changes)] TJ ET BT 26.250 423.420 Td /F1 9.8 Tf [(In responding to queries regarding potential changes in ability to carry out day-to-day tasks in specific areas, all respondents )] TJ ET BT 26.250 411.515 Td /F1 9.8 Tf [(provided information on factors that, they believed, made it difficult to do these tasks. These factors ranged from emotional to )] TJ ET BT 26.250 399.610 Td /F1 9.8 Tf [(cognitive to physical stamina topics.)] TJ ET BT 26.250 380.205 Td /F4 9.8 Tf [(Apathy/Fatigue:)] TJ ET BT 99.921 380.205 Td /F5 9.8 Tf [(I get really tired . . . Its not so much a physical thing; its a, like in your mind \(10\). I dont have the excitement )] TJ ET BT 26.250 368.301 Td /F5 9.8 Tf [(part of doing some things; its just not there \(11\).)] TJ ET BT 26.250 348.896 Td /F4 9.8 Tf [(Cognition:)] TJ ET BT 74.990 348.896 Td /F5 9.8 Tf [(Part of my trade was . . . always learning stuff; I couldnt learn . . . I couldnt remember anything anymore \(4\); )] TJ ET BT 26.250 336.991 Td /F5 9.8 Tf [(Memoryits just gone. Like my short-term memory \(3\).)] TJ ET BT 26.250 317.586 Td /F4 9.8 Tf [(Irritability:)] TJ ET BT 73.928 317.586 Td /F5 9.8 Tf [(I always seem to have that real quick to anger \(6\). Im a little short, a little cranky \(12\).)] TJ ET BT 26.250 280.984 Td /F4 12.0 Tf [(Discussion)] TJ ET BT 26.250 261.030 Td /F1 9.8 Tf [(This study examined self-reports of losses of abilities to perform day-to-day tasks in a small cohort of people in the prodromal )] TJ ET BT 26.250 249.125 Td /F1 9.8 Tf [(HD or very early phase of HD and for whom scores on the UHRDS motor scale indicated a significant increase of motor decline. )] TJ ET BT 26.250 237.220 Td /F1 9.8 Tf [(Findings indicate that changes in day-to-day task function vary in prodromal HD and those recently diagnosed with HD, but that )] TJ ET BT 26.250 225.315 Td /F1 9.8 Tf [(when changes are experienced, they are more likely to be in the domains of tasks that require multiple cognitive, motor, and )] TJ ET BT 26.250 213.411 Td /F1 9.8 Tf [(behavioral abilities. Driving is a good illustration of this because it is an activity that requires multiple domain skills and was the )] TJ ET BT 26.250 201.506 Td /F1 9.8 Tf [(most frequently mentioned area of functional difficulty in this sample. Although few reports focus on components of day-to-day )] TJ ET BT 26.250 189.601 Td /F1 9.8 Tf [(function in prodromal HD or early HD, the range of topics is consistent with those reported with less sensitive measures, )] TJ ET BT 26.250 177.696 Td /F1 9.8 Tf [(specifically that of employment and managing finances)] TJ ET 0.267 0.267 0.267 rg BT 262.522 177.696 Td /F1 9.8 Tf [( [2])] TJ ET 0.271 0.267 0.267 rg BT 276.074 177.696 Td /F1 9.8 Tf [( , which are endorsed by this cohort. In a study of changes in people )] TJ ET BT 26.250 165.792 Td /F1 9.8 Tf [(with prodromal HD over a 12 month period, changes in function as measured by the TFC are reported to show greater change )] TJ ET BT 26.250 153.887 Td /F1 9.8 Tf [(than controls, but this did not reach statistical significance )] TJ ET 0.267 0.267 0.267 rg BT 277.156 153.887 Td /F1 9.8 Tf [([18])] TJ ET 0.271 0.267 0.267 rg BT 293.419 153.887 Td /F1 9.8 Tf [( .)] TJ ET BT 26.250 134.482 Td /F1 9.8 Tf [(A potential limitation of this study includes the possibility of early lack of insight that is a component of HD )] TJ ET 0.267 0.267 0.267 rg BT 482.531 134.482 Td /F1 9.8 Tf [([19])] TJ ET 0.271 0.267 0.267 rg BT 498.793 134.482 Td /F1 9.8 Tf [( that has also )] TJ ET BT 26.250 122.577 Td /F1 9.8 Tf [(been found in persons with prodromal HD. As people with prodromal HD approached diagnosis, increasing discrepancies )] TJ ET BT 26.250 110.673 Td /F1 9.8 Tf [(between self-ratings and companion ratings of apathy, disinhibition, and executive function have been documented )] TJ ET 0.267 0.267 0.267 rg BT 523.763 110.673 Td /F1 9.8 Tf [([20])] TJ ET 0.271 0.267 0.267 rg BT 540.026 110.673 Td /F1 9.8 Tf [( . On the )] TJ ET BT 26.250 98.768 Td /F1 9.8 Tf [(other hand, self-report of cognitive impairment has been demonstrated to be a reliable indicator of mild cognitive impairment in )] TJ ET BT 26.250 86.863 Td /F1 9.8 Tf [(studies of people in early stages of dementia )] TJ ET 0.267 0.267 0.267 rg BT 221.893 86.863 Td /F1 9.8 Tf [([21] [22])] TJ ET 0.271 0.267 0.267 rg BT 257.130 86.863 Td /F1 9.8 Tf [( .)] TJ ET BT 26.250 67.458 Td /F1 9.8 Tf [(These findings suggest that day-to-day function may be impaired in some domains during the prodromal HD and recently )] TJ ET BT 26.250 55.554 Td /F1 9.8 Tf [(diagnosed period, and that measures to document function must encompass the range of domains likely to be affected in )] TJ ET BT 26.250 43.649 Td /F1 9.8 Tf [(prodromal HD. Data from these interviews were used in the development of items to assess day-to-day functioning by FuRST-)] TJ ET Q q 15.000 29.363 577.500 747.637 re W n 0.271 0.267 0.267 rg BT 26.250 767.476 Td /F4 9.8 Tf [(Telephone:)] TJ ET BT 78.257 767.476 Td /F1 9.8 Tf [( Respondents were reluctant to respond on the telephone when they werent prepared, and were selective when )] TJ ET BT 26.250 755.571 Td /F1 9.8 Tf [(they did answer the telephone. )] TJ ET BT 161.746 755.571 Td /F5 9.8 Tf [(Only if I know about it in advance. Spur of the moment . . . forget it . . . its like because it was )] TJ ET BT 26.250 743.667 Td /F5 9.8 Tf [(unexpected . . . my brains not working that way \(7\),)] TJ ET BT 248.969 743.667 Td /F1 9.8 Tf [( and )] TJ ET BT 270.653 743.667 Td /F5 9.8 Tf [(I have it print out on my TV so I it tells me who it is . . . I dont want to )] TJ ET BT 26.250 731.762 Td /F5 9.8 Tf [(get into the conversation . . . you just dont want to . . . initiate it \(8\).)] TJ ET BT 26.250 712.357 Td /F4 9.8 Tf [(Shopping:)] TJ ET BT 74.454 712.357 Td /F1 9.8 Tf [( Skills needed for shopping included being able to remember where to go for needed items, as well as what the )] TJ ET BT 26.250 700.452 Td /F1 9.8 Tf [(items are. )] TJ ET BT 71.763 700.452 Td /F5 9.8 Tf [(I make my list, and write it down . . . to make sure I remember to stop \(8\),)] TJ ET BT 387.127 700.452 Td /F1 9.8 Tf [( and )] TJ ET BT 408.811 700.452 Td /F5 9.8 Tf [(I forget things so I usually need to have )] TJ ET BT 26.250 688.548 Td /F5 9.8 Tf [(a list for everything Im going to need \(1\).)] TJ ET BT 26.250 669.143 Td /F4 9.8 Tf [(Finances:)] TJ ET BT 71.763 669.143 Td /F1 9.8 Tf [( Not being able to remember to take care of finances was mentioned by several; others also noted that they could not )] TJ ET BT 26.250 657.238 Td /F1 9.8 Tf [(keep up with the processes of calculating and managing them. )] TJ ET BT 298.304 657.238 Td /F5 9.8 Tf [(Anything concerning the bills, or anything like that, I cant )] TJ ET BT 26.250 645.333 Td /F5 9.8 Tf [(remember \(3\), uh, I just kind of dont do it, I mean, I dont know what happened \(6\), Im not very good at it, you know, adding in )] TJ ET BT 26.250 633.429 Td /F5 9.8 Tf [(my head anymore \(5\).)] TJ ET BT 26.250 614.024 Td /F4 9.8 Tf [(Paid work:)] TJ ET BT 75.556 614.024 Td /F1 9.8 Tf [( All respondents who left paid employment had done so voluntarily. Some stated they were able to retire due to )] TJ ET BT 26.250 602.119 Td /F1 9.8 Tf [(having reached the requirements for full retirement, or for family reasons. Others specifically addressed an inability to do their )] TJ ET BT 26.250 590.214 Td /F1 9.8 Tf [(jobs. )] TJ ET BT 49.552 590.214 Td /F5 9.8 Tf [(I had to leave my job because . . . I just couldnt work, like I just couldnt . . . mentally . . . I couldnt do it \(3\). I was falling )] TJ ET BT 26.250 578.310 Td /F5 9.8 Tf [(behind \(6\).)] TJ ET BT 26.250 558.905 Td /F4 9.8 Tf [(Cooking:)] TJ ET BT 68.497 558.905 Td /F1 9.8 Tf [( Multiple demands in planning and executing preparing a meal were difficult for some participants. )] TJ ET BT 492.261 558.905 Td /F5 9.8 Tf [(I think I make more )] TJ ET BT 26.250 547.000 Td /F5 9.8 Tf [(of a mess . . . But for the most part its ok; it takes me longer to clean up . . . I just forget to do things \(4\).)] TJ ET BT 26.250 527.595 Td /F4 9.8 Tf [(Hobbies and other topics:)] TJ ET BT 146.516 527.595 Td /F1 9.8 Tf [( When asked about changes in hobbies or leisure activities, none of the respondents reported )] TJ ET BT 26.250 515.691 Td /F1 9.8 Tf [(changes that were related to having prodromal HD. When asked if there were other things they had noticed, comments were )] TJ ET BT 26.250 503.786 Td /F1 9.8 Tf [(offered about motor skills. )] TJ ET BT 140.588 503.786 Td /F5 9.8 Tf [(Oh God, thats bad too; I walk into walls \(7\), I guess what you call the involuntary movements . . . I )] TJ ET BT 26.250 491.881 Td /F5 9.8 Tf [(definitely feel that it doesnt mean it makes any changes in your ability to do things . . . its just something you have noticed over )] TJ ET BT 26.250 479.976 Td /F5 9.8 Tf [(time, thats all \(9\).)] TJ ET BT 26.250 443.374 Td /F4 12.0 Tf [(Comments about Functional Changes)] TJ ET BT 26.250 423.420 Td /F1 9.8 Tf [(In responding to queries regarding potential changes in ability to carry out day-to-day tasks in specific areas, all respondents )] TJ ET BT 26.250 411.515 Td /F1 9.8 Tf [(provided information on factors that, they believed, made it difficult to do these tasks. These factors ranged from emotional to )] TJ ET BT 26.250 399.610 Td /F1 9.8 Tf [(cognitive to physical stamina topics.)] TJ ET BT 26.250 380.205 Td /F4 9.8 Tf [(Apathy/Fatigue:)] TJ ET BT 99.921 380.205 Td /F5 9.8 Tf [(I get really tired . . . Its not so much a physical thing; its a, like in your mind \(10\). I dont have the excitement )] TJ ET BT 26.250 368.301 Td /F5 9.8 Tf [(part of doing some things; its just not there \(11\).)] TJ ET BT 26.250 348.896 Td /F4 9.8 Tf [(Cognition:)] TJ ET BT 74.990 348.896 Td /F5 9.8 Tf [(Part of my trade was . . . always learning stuff; I couldnt learn . . . I couldnt remember anything anymore \(4\); )] TJ ET BT 26.250 336.991 Td /F5 9.8 Tf [(Memoryits just gone. Like my short-term memory \(3\).)] TJ ET BT 26.250 317.586 Td /F4 9.8 Tf [(Irritability:)] TJ ET BT 73.928 317.586 Td /F5 9.8 Tf [(I always seem to have that real quick to anger \(6\). Im a little short, a little cranky \(12\).)] TJ ET BT 26.250 280.984 Td /F4 12.0 Tf [(Discussion)] TJ ET BT 26.250 261.030 Td /F1 9.8 Tf [(This study examined self-reports of losses of abilities to perform day-to-day tasks in a small cohort of people in the prodromal )] TJ ET BT 26.250 249.125 Td /F1 9.8 Tf [(HD or very early phase of HD and for whom scores on the UHRDS motor scale indicated a significant increase of motor decline. )] TJ ET BT 26.250 237.220 Td /F1 9.8 Tf [(Findings indicate that changes in day-to-day task function vary in prodromal HD and those recently diagnosed with HD, but that )] TJ ET BT 26.250 225.315 Td /F1 9.8 Tf [(when changes are experienced, they are more likely to be in the domains of tasks that require multiple cognitive, motor, and )] TJ ET BT 26.250 213.411 Td /F1 9.8 Tf [(behavioral abilities. Driving is a good illustration of this because it is an activity that requires multiple domain skills and was the )] TJ ET BT 26.250 201.506 Td /F1 9.8 Tf [(most frequently mentioned area of functional difficulty in this sample. Although few reports focus on components of day-to-day )] TJ ET BT 26.250 189.601 Td /F1 9.8 Tf [(function in prodromal HD or early HD, the range of topics is consistent with those reported with less sensitive measures, )] TJ ET BT 26.250 177.696 Td /F1 9.8 Tf [(specifically that of employment and managing finances)] TJ ET 0.267 0.267 0.267 rg BT 262.522 177.696 Td /F1 9.8 Tf [( [2])] TJ ET 0.271 0.267 0.267 rg BT 276.074 177.696 Td /F1 9.8 Tf [( , which are endorsed by this cohort. In a study of changes in people )] TJ ET BT 26.250 165.792 Td /F1 9.8 Tf [(with prodromal HD over a 12 month period, changes in function as measured by the TFC are reported to show greater change )] TJ ET BT 26.250 153.887 Td /F1 9.8 Tf [(than controls, but this did not reach statistical significance )] TJ ET 0.267 0.267 0.267 rg BT 277.156 153.887 Td /F1 9.8 Tf [([18])] TJ ET 0.271 0.267 0.267 rg BT 293.419 153.887 Td /F1 9.8 Tf [( .)] TJ ET BT 26.250 134.482 Td /F1 9.8 Tf [(A potential limitation of this study includes the possibility of early lack of insight that is a component of HD )] TJ ET 0.267 0.267 0.267 rg BT 482.531 134.482 Td /F1 9.8 Tf [([19])] TJ ET 0.271 0.267 0.267 rg BT 498.793 134.482 Td /F1 9.8 Tf [( that has also )] TJ ET BT 26.250 122.577 Td /F1 9.8 Tf [(been found in persons with prodromal HD. As people with prodromal HD approached diagnosis, increasing discrepancies )] TJ ET BT 26.250 110.673 Td /F1 9.8 Tf [(between self-ratings and companion ratings of apathy, disinhibition, and executive function have been documented )] TJ ET 0.267 0.267 0.267 rg BT 523.763 110.673 Td /F1 9.8 Tf [([20])] TJ ET 0.271 0.267 0.267 rg BT 540.026 110.673 Td /F1 9.8 Tf [( . On the )] TJ ET BT 26.250 98.768 Td /F1 9.8 Tf [(other hand, self-report of cognitive impairment has been demonstrated to be a reliable indicator of mild cognitive impairment in )] TJ ET BT 26.250 86.863 Td /F1 9.8 Tf [(studies of people in early stages of dementia )] TJ ET 0.267 0.267 0.267 rg BT 221.893 86.863 Td /F1 9.8 Tf [([21] [22])] TJ ET 0.271 0.267 0.267 rg BT 257.130 86.863 Td /F1 9.8 Tf [( .)] TJ ET BT 26.250 67.458 Td /F1 9.8 Tf [(These findings suggest that day-to-day function may be impaired in some domains during the prodromal HD and recently )] TJ ET BT 26.250 55.554 Td /F1 9.8 Tf [(diagnosed period, and that measures to document function must encompass the range of domains likely to be affected in )] TJ ET BT 26.250 43.649 Td /F1 9.8 Tf [(prodromal HD. Data from these interviews were used in the development of items to assess day-to-day functioning by FuRST-)] 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 Huntington Disease)] TJ ET Q endstream endobj 207 0 obj << /Type /Annot /Subtype /Link /A 208 0 R /Border [0 0 0] /H /I /Rect [ 262.5217 176.7946 276.0743 186.7152 ] >> endobj 208 0 obj << /Type /Action >> endobj 209 0 obj << /Type /Annot /Subtype /Link /A 210 0 R /Border [0 0 0] /H /I /Rect [ 277.1565 152.9851 293.4195 162.9057 ] >> endobj 210 0 obj << /Type /Action >> endobj 211 0 obj << /Type /Annot /Subtype /Link /A 212 0 R /Border [0 0 0] /H /I /Rect [ 482.5305 133.5803 498.7935 143.5009 ] >> endobj 212 0 obj << /Type /Action >> endobj 213 0 obj << /Type /Annot /Subtype /Link /A 214 0 R /Border [0 0 0] /H /I /Rect [ 523.7632 109.7708 540.0263 119.6914 ] >> endobj 214 0 obj << /Type /Action >> endobj 215 0 obj << /Type /Annot /Subtype /Link /A 216 0 R /Border [0 0 0] /H /I /Rect [ 221.8935 85.9613 257.1300 95.8819 ] >> endobj 216 0 obj << /Type /Action >> endobj 217 0 obj << /Type /Annot /Subtype /Link /A 218 0 R /Border [0 0 0] /H /I /Rect [ 262.5217 176.7946 276.0743 186.7152 ] >> endobj 218 0 obj << /Type /Action >> endobj 219 0 obj << /Type /Annot /Subtype /Link /A 220 0 R /Border [0 0 0] /H /I /Rect [ 277.1565 152.9851 293.4195 162.9057 ] >> endobj 220 0 obj << /Type /Action >> endobj 221 0 obj << /Type /Annot /Subtype /Link /A 222 0 R /Border [0 0 0] /H /I /Rect [ 482.5305 133.5803 498.7935 143.5009 ] >> endobj 222 0 obj << /Type /Action >> endobj 223 0 obj << /Type /Annot /Subtype /Link /A 224 0 R /Border [0 0 0] /H /I /Rect [ 523.7632 109.7708 540.0263 119.6914 ] >> endobj 224 0 obj << /Type /Action >> endobj 225 0 obj << /Type /Annot /Subtype /Link /A 226 0 R /Border [0 0 0] /H /I /Rect [ 221.8935 85.9613 257.1300 95.8819 ] >> endobj 226 0 obj << /Type /Action >> endobj 227 0 obj << /Type /Annot /Subtype /Link /A 228 0 R /Border [0 0 0] /H /I /Rect [ 262.5217 176.7946 276.0743 186.7152 ] >> endobj 228 0 obj << /Type /Action >> endobj 229 0 obj << /Type /Annot /Subtype /Link /A 230 0 R /Border [0 0 0] /H /I /Rect [ 277.1565 152.9851 293.4195 162.9057 ] >> endobj 230 0 obj << /Type /Action >> endobj 231 0 obj << /Type /Annot /Subtype /Link /A 232 0 R /Border [0 0 0] /H /I /Rect [ 482.5305 133.5803 498.7935 143.5009 ] >> endobj 232 0 obj << /Type /Action >> endobj 233 0 obj << /Type /Annot /Subtype /Link /A 234 0 R /Border [0 0 0] /H /I /Rect [ 523.7632 109.7708 540.0263 119.6914 ] >> endobj 234 0 obj << /Type /Action >> endobj 235 0 obj << /Type /Annot /Subtype /Link /A 236 0 R /Border [0 0 0] /H /I /Rect [ 221.8935 85.9613 257.1300 95.8819 ] >> endobj 236 0 obj << /Type /Action >> endobj 237 0 obj << /Type /Page /Parent 3 0 R /Contents 238 0 R >> endobj 238 0 obj << /Length 23263 >> stream 0.271 0.267 0.267 rg q 15.000 22.211 577.500 754.789 re W n 0.271 0.267 0.267 rg BT 26.250 767.476 Td /F1 9.8 Tf [(pHD; and initiative to develop a rating scale for assessing symptoms and functional ability in prodromal and early HD. Further )] TJ ET BT 26.250 755.571 Td /F1 9.8 Tf [(investigations may provide insight into factors associated with the domains in which people with prodromal HD perceive )] TJ ET BT 26.250 743.667 Td /F1 9.8 Tf [(changes, as well as provide data to monitor progression of day-to-day function over time.)] TJ ET BT 26.250 707.064 Td /F4 12.0 Tf [(Funding information)] TJ ET BT 26.250 687.110 Td /F1 9.8 Tf [(This research is supported by the National Institutes for Health, National Institute of Neurological Disorders and Stroke )] TJ ET BT 26.250 675.205 Td /F1 9.8 Tf [(\(NS40068\) and CHDI Foundation, Inc.)] TJ ET BT 26.250 638.603 Td /F4 12.0 Tf [(Acknowledgments)] TJ ET BT 26.250 618.648 Td /F1 9.8 Tf [(We thank the PREDICT-HD sites, the study participants, and the National Research Roster for Huntington Disease Patients and )] TJ ET BT 26.250 606.744 Td /F1 9.8 Tf [(Families. The full list of those involved with the PREDICT-HD study is shown below.)] TJ ET BT 26.250 570.141 Td /F4 12.0 Tf [(Competing interests)] TJ ET BT 26.250 550.187 Td /F1 9.8 Tf [(The authors declare no competing interests.)] TJ ET BT 26.250 530.782 Td /F4 9.8 Tf [(PREDICT-HD Investigators, Coordinators, Motor Raters, Cognitive Raters)] TJ ET BT 26.250 511.377 Td /F5 9.8 Tf [(Active: September 2009-August 2010)] TJ ET BT 26.250 491.973 Td /F1 9.8 Tf [(Thomas Wassink, MD, Stephen Cross, BA, Nicholas Doucette, BA, Mycah Kimble, BA, Patricia Ryan, MSW, LISW, MA, Jessica )] TJ ET BT 26.250 480.068 Td /F1 9.8 Tf [(Wood, MD, PhD, Eric A. Epping, MD, PhD, and Leigh J. Beglinger, PhD \(University of Iowa, Iowa City, Iowa, USA\); Edmond )] TJ ET BT 26.250 468.163 Td /F1 9.8 Tf [(Chiu, MD, Olga Yastrubetskaya, PhD, Joy Preston, Anita Goh, D.Psych, Chathushka Fonseka, and Liz Ronsisvalle \(St. )] TJ ET BT 26.250 456.258 Td /F1 9.8 Tf [(Vincents Hospital, The University of Melbourne, Kew, Victoria, Australia\); Phyllis Chua, MD, and Angela Komiti, BS, MA \(The )] TJ ET BT 26.250 444.354 Td /F1 9.8 Tf [(University of Melbourne, Royal Melbourne Hospital, Melbourne, Australia\); Lynn Raymond, MD, PhD, Rachelle Dar Santos, )] TJ ET BT 26.250 432.449 Td /F1 9.8 Tf [(BSc, and Joji Decolongon, MSC, CCRP \(University of British Columbia, Vancouver, British Columbia, Canada\); Adam )] TJ ET BT 26.250 420.544 Td /F1 9.8 Tf [(Rosenblatt, MD, Christopher A. Ross, MD, PhD, Barnett Shpritz, BS, MA, OD, and Claire Welsh \(Johns Hopkins University, )] TJ ET BT 26.250 408.639 Td /F1 9.8 Tf [(Baltimore, Maryland, USA\); William M. Mallonee, MD, Greg Suter, BA, and Judy Addison \(Hereditary Neurological Disease )] TJ ET BT 26.250 396.735 Td /F1 9.8 Tf [(Centre, Wichita, Kansas, USA\); Ali Samii, MD, and Alma Macaraeg, BS \(University of Washington and VA Puget Sound Health )] TJ ET BT 26.250 384.830 Td /F1 9.8 Tf [(Care System, Seattle, Washington, USA\); Randi Jones, PhD, Cathy Wood-Siverio, MS, Stewart A. Factor, DO, and Claudia )] TJ ET BT 26.250 372.925 Td /F1 9.8 Tf [(Testa, MD, PhD \(Emory University School of Medicine, Atlanta, Georgia, USA\); Roger A. Barker, BA, MBBS, MRCP, Sarah )] TJ ET BT 26.250 361.020 Td /F1 9.8 Tf [(Mason, BSC, Anna Goodman, PhD, Rachel Swain, BA, and Anna DiPietro \(Cambridge Centre for Brain Repair, Cambridge, )] TJ ET BT 26.250 349.116 Td /F1 9.8 Tf [(UK\); Elizabeth McCusker, MD, Jane Griffith, RN, Clement Loy, MD, David Gunn, BS, and Linda Stewart, RN \(Westmead )] TJ ET BT 26.250 337.211 Td /F1 9.8 Tf [(Hospital, Sydney, Australia\); Bernhard G. Landwehrmeyer, MD, Michael Orth MD, PhD, Sigurd S?muth, MD, RN, Katrin Barth, )] TJ ET BT 26.250 325.306 Td /F1 9.8 Tf [(RN, and Sonja Trautmann, RN \(University of Ulm, Ulm, Germany\); Kimberly Quaid, PhD, Melissa Wesson, MS, and Joanne )] TJ ET BT 26.250 313.401 Td /F1 9.8 Tf [(Wojcieszek, MD \(Indiana University School of Medicine, Indianapolis, IN\); Mark Guttman, MD, Alanna Sheinberg, BA, and Irita )] TJ ET BT 26.250 301.497 Td /F1 9.8 Tf [(Karmalkar, BSc \(Centre for Addiction and Mental Health, University of Toronto, Markham, Ontario, Canada\); Susan Perlman, )] TJ ET BT 26.250 289.592 Td /F1 9.8 Tf [(MD and Arik Johnson, PsyD \(University of California, Los Angeles Medical Center, Los Angeles, California, USA\); Michael D. )] TJ ET BT 26.250 277.687 Td /F1 9.8 Tf [(Geschwind, MD, PhD, Jon Gooblar, BA, and Gail Kang, MD \(University of California San Francisco, California, USA\); Tom )] TJ ET BT 26.250 265.782 Td /F1 9.8 Tf [(Warner, MD, PhD, Maggie Burrows, RN, BA, Marianne Novak, MD, )] TJ ET BT 319.364 265.782 Td /F1 9.8 Tf [( Thomasin Andrews, MD, BSC, MRCP, Elisabeth Rosser, )] TJ ET BT 26.250 253.878 Td /F1 9.8 Tf [(MBBS, FRCP, and Sarah Tabrizi, MD, PhD \(National Hospital for Neurology and Neurosurgery, London, UK\); Anne Rosser, )] TJ ET BT 26.250 241.973 Td /F1 9.8 Tf [(MD, PhD, MRCP, Kathy Price, RN, and Sarah Hunt, BSc \(Cardiff University, Cardiff, Wales, UK\); Frederick Marshall, MD, Amy )] TJ ET BT 26.250 230.068 Td /F1 9.8 Tf [(Chesire, LCSW-R, MSG, Mary Wodarski, BA, and Charlyne Hickey, RN, MS \(University of Rochester, Rochester, New York, )] TJ ET BT 26.250 218.163 Td /F1 9.8 Tf [(USA\); Oksana Suchowersky, MD, FRCPC, Sarah Furtado, MD, PhD, FRCPC, and Mary Lou Klimek, RN, BN, MA \(University of )] TJ ET BT 26.250 206.259 Td /F1 9.8 Tf [(Calgary, Calgary, Alberta, Canada\); Peter Panegyres, MB, BS, PhD, Elizabeth Vuletich, BSC, Steve Andrew, and Rachel )] TJ ET BT 26.250 194.354 Td /F1 9.8 Tf [(Zombor, MPSYC \(Neurosciences Unit, Graylands, Selby-Lemnos & Special Care Health Services, Perth, Australia\); Joel )] TJ ET BT 26.250 182.449 Td /F1 9.8 Tf [(Perlmutter, MD, Stacey Barton, MSW, LCSW, and Amy Schmidt \(Washington University, St. Louis, Missouri, USA\); Zosia )] TJ ET BT 26.250 170.544 Td /F1 9.8 Tf [(Miedzybrodzka, MD, PhD, Sheila A. Simpson, MD, Daniela Rae, RN, and Mariella DAlessandro, PhD \(Clinical Genetics Centre, )] TJ ET BT 26.250 158.640 Td /F1 9.8 Tf [(Aberdeen, Scotland, UK\); David Craufurd, MD, Ruth Fullam, BSC, and Elizabeth Howard, MD \(University of Manchester, )] TJ ET BT 26.250 146.735 Td /F1 9.8 Tf [(Manchester, UK\); Pietro Mazzoni, MD, PhD, Karen Marder, MD, MPH, and Paula Wasserman, MA \(Columbia University )] TJ ET BT 26.250 134.830 Td /F1 9.8 Tf [(Medical Center, New York, New York, USA\); Rajeev Kumar, MD and Diane Erickson, RN \(Colorado Neurological Institute, )] TJ ET BT 26.250 122.925 Td /F1 9.8 Tf [(Englewood, Colorado, USA\); Vicki Wheelock, MD, Terry Tempkin, RNC, MSN, Nicole Mans, BA, MS, and Kathleen Baynes, )] TJ ET BT 26.250 111.021 Td /F1 9.8 Tf [(PhD \(University of California Davis, Sacramento, California, USA\); Joseph Jankovic, MD, Christine Hunter, RN, CCRC, and )] TJ ET BT 26.250 99.116 Td /F1 9.8 Tf [(William Ondo, MD \(Baylor College of Medicine, Houston, Texas, USA\); Justo Garcia de Yebenes, MD, Monica Bascunana )] TJ ET BT 26.250 87.211 Td /F1 9.8 Tf [(Garde, Marta Fatas, BA, and Asuncion Martinez-Descales \(Hospital Ramn y Cajal, Madrid, Spain\); Wayne Martin, MD, Pamela )] TJ ET BT 26.250 75.306 Td /F1 9.8 Tf [(King, BScN, RN, and Satwinder Sran, BSC \(University of Alberta, Edmonton, Alberta, Canada\); Anwar Ahmed, PhD, Stephen )] TJ ET BT 26.250 63.402 Td /F1 9.8 Tf [(Rao, PhD, Christine Reece, BS, Janice Zimbelman, PhD, PT, Alexandra Bea, BA, Emily Newman, BA, and Alex Bura, BA )] TJ ET BT 26.250 51.497 Td /F1 9.8 Tf [(\(Cleveland Clinic Foundation, Cleveland, Ohio, USA\).)] TJ ET Q q 15.000 22.211 577.500 754.789 re W n 0.271 0.267 0.267 rg BT 26.250 767.476 Td /F1 9.8 Tf [(pHD; and initiative to develop a rating scale for assessing symptoms and functional ability in prodromal and early HD. Further )] TJ ET BT 26.250 755.571 Td /F1 9.8 Tf [(investigations may provide insight into factors associated with the domains in which people with prodromal HD perceive )] TJ ET BT 26.250 743.667 Td /F1 9.8 Tf [(changes, as well as provide data to monitor progression of day-to-day function over time.)] TJ ET BT 26.250 707.064 Td /F4 12.0 Tf [(Funding information)] TJ ET BT 26.250 687.110 Td /F1 9.8 Tf [(This research is supported by the National Institutes for Health, National Institute of Neurological Disorders and Stroke )] TJ ET BT 26.250 675.205 Td /F1 9.8 Tf [(\(NS40068\) and CHDI Foundation, Inc.)] TJ ET BT 26.250 638.603 Td /F4 12.0 Tf [(Acknowledgments)] TJ ET BT 26.250 618.648 Td /F1 9.8 Tf [(We thank the PREDICT-HD sites, the study participants, and the National Research Roster for Huntington Disease Patients and )] TJ ET BT 26.250 606.744 Td /F1 9.8 Tf [(Families. The full list of those involved with the PREDICT-HD study is shown below.)] TJ ET BT 26.250 570.141 Td /F4 12.0 Tf [(Competing interests)] TJ ET BT 26.250 550.187 Td /F1 9.8 Tf [(The authors declare no competing interests.)] TJ ET BT 26.250 530.782 Td /F4 9.8 Tf [(PREDICT-HD Investigators, Coordinators, Motor Raters, Cognitive Raters)] TJ ET BT 26.250 511.377 Td /F5 9.8 Tf [(Active: September 2009-August 2010)] TJ ET BT 26.250 491.973 Td /F1 9.8 Tf [(Thomas Wassink, MD, Stephen Cross, BA, Nicholas Doucette, BA, Mycah Kimble, BA, Patricia Ryan, MSW, LISW, MA, Jessica )] TJ ET BT 26.250 480.068 Td /F1 9.8 Tf [(Wood, MD, PhD, Eric A. Epping, MD, PhD, and Leigh J. Beglinger, PhD \(University of Iowa, Iowa City, Iowa, USA\); Edmond )] TJ ET BT 26.250 468.163 Td /F1 9.8 Tf [(Chiu, MD, Olga Yastrubetskaya, PhD, Joy Preston, Anita Goh, D.Psych, Chathushka Fonseka, and Liz Ronsisvalle \(St. )] TJ ET BT 26.250 456.258 Td /F1 9.8 Tf [(Vincents Hospital, The University of Melbourne, Kew, Victoria, Australia\); Phyllis Chua, MD, and Angela Komiti, BS, MA \(The )] TJ ET BT 26.250 444.354 Td /F1 9.8 Tf [(University of Melbourne, Royal Melbourne Hospital, Melbourne, Australia\); Lynn Raymond, MD, PhD, Rachelle Dar Santos, )] TJ ET BT 26.250 432.449 Td /F1 9.8 Tf [(BSc, and Joji Decolongon, MSC, CCRP \(University of British Columbia, Vancouver, British Columbia, Canada\); Adam )] TJ ET BT 26.250 420.544 Td /F1 9.8 Tf [(Rosenblatt, MD, Christopher A. Ross, MD, PhD, Barnett Shpritz, BS, MA, OD, and Claire Welsh \(Johns Hopkins University, )] TJ ET BT 26.250 408.639 Td /F1 9.8 Tf [(Baltimore, Maryland, USA\); William M. Mallonee, MD, Greg Suter, BA, and Judy Addison \(Hereditary Neurological Disease )] TJ ET BT 26.250 396.735 Td /F1 9.8 Tf [(Centre, Wichita, Kansas, USA\); Ali Samii, MD, and Alma Macaraeg, BS \(University of Washington and VA Puget Sound Health )] TJ ET BT 26.250 384.830 Td /F1 9.8 Tf [(Care System, Seattle, Washington, USA\); Randi Jones, PhD, Cathy Wood-Siverio, MS, Stewart A. Factor, DO, and Claudia )] TJ ET BT 26.250 372.925 Td /F1 9.8 Tf [(Testa, MD, PhD \(Emory University School of Medicine, Atlanta, Georgia, USA\); Roger A. Barker, BA, MBBS, MRCP, Sarah )] TJ ET BT 26.250 361.020 Td /F1 9.8 Tf [(Mason, BSC, Anna Goodman, PhD, Rachel Swain, BA, and Anna DiPietro \(Cambridge Centre for Brain Repair, Cambridge, )] TJ ET BT 26.250 349.116 Td /F1 9.8 Tf [(UK\); Elizabeth McCusker, MD, Jane Griffith, RN, Clement Loy, MD, David Gunn, BS, and Linda Stewart, RN \(Westmead )] TJ ET BT 26.250 337.211 Td /F1 9.8 Tf [(Hospital, Sydney, Australia\); Bernhard G. Landwehrmeyer, MD, Michael Orth MD, PhD, Sigurd S?muth, MD, RN, Katrin Barth, )] TJ ET BT 26.250 325.306 Td /F1 9.8 Tf [(RN, and Sonja Trautmann, RN \(University of Ulm, Ulm, Germany\); Kimberly Quaid, PhD, Melissa Wesson, MS, and Joanne )] TJ ET BT 26.250 313.401 Td /F1 9.8 Tf [(Wojcieszek, MD \(Indiana University School of Medicine, Indianapolis, IN\); Mark Guttman, MD, Alanna Sheinberg, BA, and Irita )] TJ ET BT 26.250 301.497 Td /F1 9.8 Tf [(Karmalkar, BSc \(Centre for Addiction and Mental Health, University of Toronto, Markham, Ontario, Canada\); Susan Perlman, )] TJ ET BT 26.250 289.592 Td /F1 9.8 Tf [(MD and Arik Johnson, PsyD \(University of California, Los Angeles Medical Center, Los Angeles, California, USA\); Michael D. )] TJ ET BT 26.250 277.687 Td /F1 9.8 Tf [(Geschwind, MD, PhD, Jon Gooblar, BA, and Gail Kang, MD \(University of California San Francisco, California, USA\); Tom )] TJ ET BT 26.250 265.782 Td /F1 9.8 Tf [(Warner, MD, PhD, Maggie Burrows, RN, BA, Marianne Novak, MD, )] TJ ET BT 319.364 265.782 Td /F1 9.8 Tf [( Thomasin Andrews, MD, BSC, MRCP, Elisabeth Rosser, )] TJ ET BT 26.250 253.878 Td /F1 9.8 Tf [(MBBS, FRCP, and Sarah Tabrizi, MD, PhD \(National Hospital for Neurology and Neurosurgery, London, UK\); Anne Rosser, )] TJ ET BT 26.250 241.973 Td /F1 9.8 Tf [(MD, PhD, MRCP, Kathy Price, RN, and Sarah Hunt, BSc \(Cardiff University, Cardiff, Wales, UK\); Frederick Marshall, MD, Amy )] TJ ET BT 26.250 230.068 Td /F1 9.8 Tf [(Chesire, LCSW-R, MSG, Mary Wodarski, BA, and Charlyne Hickey, RN, MS \(University of Rochester, Rochester, New York, )] TJ ET BT 26.250 218.163 Td /F1 9.8 Tf [(USA\); Oksana Suchowersky, MD, FRCPC, Sarah Furtado, MD, PhD, FRCPC, and Mary Lou Klimek, RN, BN, MA \(University of )] TJ ET BT 26.250 206.259 Td /F1 9.8 Tf [(Calgary, Calgary, Alberta, Canada\); Peter Panegyres, MB, BS, PhD, Elizabeth Vuletich, BSC, Steve Andrew, and Rachel )] TJ ET BT 26.250 194.354 Td /F1 9.8 Tf [(Zombor, MPSYC \(Neurosciences Unit, Graylands, Selby-Lemnos & Special Care Health Services, Perth, Australia\); Joel )] TJ ET BT 26.250 182.449 Td /F1 9.8 Tf [(Perlmutter, MD, Stacey Barton, MSW, LCSW, and Amy Schmidt \(Washington University, St. Louis, Missouri, USA\); Zosia )] TJ ET BT 26.250 170.544 Td /F1 9.8 Tf [(Miedzybrodzka, MD, PhD, Sheila A. Simpson, MD, Daniela Rae, RN, and Mariella DAlessandro, PhD \(Clinical Genetics Centre, )] TJ ET BT 26.250 158.640 Td /F1 9.8 Tf [(Aberdeen, Scotland, UK\); David Craufurd, MD, Ruth Fullam, BSC, and Elizabeth Howard, MD \(University of Manchester, )] TJ ET BT 26.250 146.735 Td /F1 9.8 Tf [(Manchester, UK\); Pietro Mazzoni, MD, PhD, Karen Marder, MD, MPH, and Paula Wasserman, MA \(Columbia University )] TJ ET BT 26.250 134.830 Td /F1 9.8 Tf [(Medical Center, New York, New York, USA\); Rajeev Kumar, MD and Diane Erickson, RN \(Colorado Neurological Institute, )] TJ ET BT 26.250 122.925 Td /F1 9.8 Tf [(Englewood, Colorado, USA\); Vicki Wheelock, MD, Terry Tempkin, RNC, MSN, Nicole Mans, BA, MS, and Kathleen Baynes, )] TJ ET BT 26.250 111.021 Td /F1 9.8 Tf [(PhD \(University of California Davis, Sacramento, California, USA\); Joseph Jankovic, MD, Christine Hunter, RN, CCRC, and )] TJ ET BT 26.250 99.116 Td /F1 9.8 Tf [(William Ondo, MD \(Baylor College of Medicine, Houston, Texas, USA\); Justo Garcia de Yebenes, MD, Monica Bascunana )] TJ ET BT 26.250 87.211 Td /F1 9.8 Tf [(Garde, Marta Fatas, BA, and Asuncion Martinez-Descales \(Hospital Ramn y Cajal, Madrid, Spain\); Wayne Martin, MD, Pamela )] TJ ET BT 26.250 75.306 Td /F1 9.8 Tf [(King, BScN, RN, and Satwinder Sran, BSC \(University of Alberta, Edmonton, Alberta, Canada\); Anwar Ahmed, PhD, Stephen )] TJ ET BT 26.250 63.402 Td /F1 9.8 Tf [(Rao, PhD, Christine Reece, BS, Janice Zimbelman, PhD, PT, Alexandra Bea, BA, Emily Newman, BA, and Alex Bura, BA )] TJ ET BT 26.250 51.497 Td /F1 9.8 Tf [(\(Cleveland Clinic Foundation, Cleveland, Ohio, USA\).)] TJ ET Q q 15.000 22.211 577.500 754.789 re W n 0.271 0.267 0.267 rg BT 26.250 767.476 Td /F1 9.8 Tf [(pHD; and initiative to develop a rating scale for assessing symptoms and functional ability in prodromal and early HD. Further )] TJ ET BT 26.250 755.571 Td /F1 9.8 Tf [(investigations may provide insight into factors associated with the domains in which people with prodromal HD perceive )] TJ ET BT 26.250 743.667 Td /F1 9.8 Tf [(changes, as well as provide data to monitor progression of day-to-day function over time.)] TJ ET BT 26.250 707.064 Td /F4 12.0 Tf [(Funding information)] TJ ET BT 26.250 687.110 Td /F1 9.8 Tf [(This research is supported by the National Institutes for Health, National Institute of Neurological Disorders and Stroke )] TJ ET BT 26.250 675.205 Td /F1 9.8 Tf [(\(NS40068\) and CHDI Foundation, Inc.)] TJ ET BT 26.250 638.603 Td /F4 12.0 Tf [(Acknowledgments)] TJ ET BT 26.250 618.648 Td /F1 9.8 Tf [(We thank the PREDICT-HD sites, the study participants, and the National Research Roster for Huntington Disease Patients and )] TJ ET BT 26.250 606.744 Td /F1 9.8 Tf [(Families. The full list of those involved with the PREDICT-HD study is shown below.)] TJ ET BT 26.250 570.141 Td /F4 12.0 Tf [(Competing interests)] TJ ET BT 26.250 550.187 Td /F1 9.8 Tf [(The authors declare no competing interests.)] TJ ET BT 26.250 530.782 Td /F4 9.8 Tf [(PREDICT-HD Investigators, Coordinators, Motor Raters, Cognitive Raters)] TJ ET BT 26.250 511.377 Td /F5 9.8 Tf [(Active: September 2009-August 2010)] TJ ET BT 26.250 491.973 Td /F1 9.8 Tf [(Thomas Wassink, MD, Stephen Cross, BA, Nicholas Doucette, BA, Mycah Kimble, BA, Patricia Ryan, MSW, LISW, MA, Jessica )] TJ ET BT 26.250 480.068 Td /F1 9.8 Tf [(Wood, MD, PhD, Eric A. Epping, MD, PhD, and Leigh J. Beglinger, PhD \(University of Iowa, Iowa City, Iowa, USA\); Edmond )] TJ ET BT 26.250 468.163 Td /F1 9.8 Tf [(Chiu, MD, Olga Yastrubetskaya, PhD, Joy Preston, Anita Goh, D.Psych, Chathushka Fonseka, and Liz Ronsisvalle \(St. )] TJ ET BT 26.250 456.258 Td /F1 9.8 Tf [(Vincents Hospital, The University of Melbourne, Kew, Victoria, Australia\); Phyllis Chua, MD, and Angela Komiti, BS, MA \(The )] TJ ET BT 26.250 444.354 Td /F1 9.8 Tf [(University of Melbourne, Royal Melbourne Hospital, Melbourne, Australia\); Lynn Raymond, MD, PhD, Rachelle Dar Santos, )] TJ ET BT 26.250 432.449 Td /F1 9.8 Tf [(BSc, and Joji Decolongon, MSC, CCRP \(University of British Columbia, Vancouver, British Columbia, Canada\); Adam )] TJ ET BT 26.250 420.544 Td /F1 9.8 Tf [(Rosenblatt, MD, Christopher A. Ross, MD, PhD, Barnett Shpritz, BS, MA, OD, and Claire Welsh \(Johns Hopkins University, )] TJ ET BT 26.250 408.639 Td /F1 9.8 Tf [(Baltimore, Maryland, USA\); William M. Mallonee, MD, Greg Suter, BA, and Judy Addison \(Hereditary Neurological Disease )] TJ ET BT 26.250 396.735 Td /F1 9.8 Tf [(Centre, Wichita, Kansas, USA\); Ali Samii, MD, and Alma Macaraeg, BS \(University of Washington and VA Puget Sound Health )] TJ ET BT 26.250 384.830 Td /F1 9.8 Tf [(Care System, Seattle, Washington, USA\); Randi Jones, PhD, Cathy Wood-Siverio, MS, Stewart A. Factor, DO, and Claudia )] TJ ET BT 26.250 372.925 Td /F1 9.8 Tf [(Testa, MD, PhD \(Emory University School of Medicine, Atlanta, Georgia, USA\); Roger A. Barker, BA, MBBS, MRCP, Sarah )] TJ ET BT 26.250 361.020 Td /F1 9.8 Tf [(Mason, BSC, Anna Goodman, PhD, Rachel Swain, BA, and Anna DiPietro \(Cambridge Centre for Brain Repair, Cambridge, )] TJ ET BT 26.250 349.116 Td /F1 9.8 Tf [(UK\); Elizabeth McCusker, MD, Jane Griffith, RN, Clement Loy, MD, David Gunn, BS, and Linda Stewart, RN \(Westmead )] TJ ET BT 26.250 337.211 Td /F1 9.8 Tf [(Hospital, Sydney, Australia\); Bernhard G. Landwehrmeyer, MD, Michael Orth MD, PhD, Sigurd S?muth, MD, RN, Katrin Barth, )] TJ ET BT 26.250 325.306 Td /F1 9.8 Tf [(RN, and Sonja Trautmann, RN \(University of Ulm, Ulm, Germany\); Kimberly Quaid, PhD, Melissa Wesson, MS, and Joanne )] TJ ET BT 26.250 313.401 Td /F1 9.8 Tf [(Wojcieszek, MD \(Indiana University School of Medicine, Indianapolis, IN\); Mark Guttman, MD, Alanna Sheinberg, BA, and Irita )] TJ ET BT 26.250 301.497 Td /F1 9.8 Tf [(Karmalkar, BSc \(Centre for Addiction and Mental Health, University of Toronto, Markham, Ontario, Canada\); Susan Perlman, )] TJ ET BT 26.250 289.592 Td /F1 9.8 Tf [(MD and Arik Johnson, PsyD \(University of California, Los Angeles Medical Center, Los Angeles, California, USA\); Michael D. )] TJ ET BT 26.250 277.687 Td /F1 9.8 Tf [(Geschwind, MD, PhD, Jon Gooblar, BA, and Gail Kang, MD \(University of California San Francisco, California, USA\); Tom )] TJ ET BT 26.250 265.782 Td /F1 9.8 Tf [(Warner, MD, PhD, Maggie Burrows, RN, BA, Marianne Novak, MD, )] TJ ET BT 319.364 265.782 Td /F1 9.8 Tf [( Thomasin Andrews, MD, BSC, MRCP, Elisabeth Rosser, )] TJ ET BT 26.250 253.878 Td /F1 9.8 Tf [(MBBS, FRCP, and Sarah Tabrizi, MD, PhD \(National Hospital for Neurology and Neurosurgery, London, UK\); Anne Rosser, )] TJ ET BT 26.250 241.973 Td /F1 9.8 Tf [(MD, PhD, MRCP, Kathy Price, RN, and Sarah Hunt, BSc \(Cardiff University, Cardiff, Wales, UK\); Frederick Marshall, MD, Amy )] TJ ET BT 26.250 230.068 Td /F1 9.8 Tf [(Chesire, LCSW-R, MSG, Mary Wodarski, BA, and Charlyne Hickey, RN, MS \(University of Rochester, Rochester, New York, )] TJ ET BT 26.250 218.163 Td /F1 9.8 Tf [(USA\); Oksana Suchowersky, MD, FRCPC, Sarah Furtado, MD, PhD, FRCPC, and Mary Lou Klimek, RN, BN, MA \(University of )] TJ ET BT 26.250 206.259 Td /F1 9.8 Tf [(Calgary, Calgary, Alberta, Canada\); Peter Panegyres, MB, BS, PhD, Elizabeth Vuletich, BSC, Steve Andrew, and Rachel )] TJ ET BT 26.250 194.354 Td /F1 9.8 Tf [(Zombor, MPSYC \(Neurosciences Unit, Graylands, Selby-Lemnos & Special Care Health Services, Perth, Australia\); Joel )] TJ ET BT 26.250 182.449 Td /F1 9.8 Tf [(Perlmutter, MD, Stacey Barton, MSW, LCSW, and Amy Schmidt \(Washington University, St. Louis, Missouri, USA\); Zosia )] TJ ET BT 26.250 170.544 Td /F1 9.8 Tf [(Miedzybrodzka, MD, PhD, Sheila A. Simpson, MD, Daniela Rae, RN, and Mariella DAlessandro, PhD \(Clinical Genetics Centre, )] TJ ET BT 26.250 158.640 Td /F1 9.8 Tf [(Aberdeen, Scotland, UK\); David Craufurd, MD, Ruth Fullam, BSC, and Elizabeth Howard, MD \(University of Manchester, )] TJ ET BT 26.250 146.735 Td /F1 9.8 Tf [(Manchester, UK\); Pietro Mazzoni, MD, PhD, Karen Marder, MD, MPH, and Paula Wasserman, MA \(Columbia University )] TJ ET BT 26.250 134.830 Td /F1 9.8 Tf [(Medical Center, New York, New York, USA\); Rajeev Kumar, MD and Diane Erickson, RN \(Colorado Neurological Institute, )] TJ ET BT 26.250 122.925 Td /F1 9.8 Tf [(Englewood, Colorado, USA\); Vicki Wheelock, MD, Terry Tempkin, RNC, MSN, Nicole Mans, BA, MS, and Kathleen Baynes, )] TJ ET BT 26.250 111.021 Td /F1 9.8 Tf [(PhD \(University of California Davis, Sacramento, California, USA\); Joseph Jankovic, MD, Christine Hunter, RN, CCRC, and )] TJ ET BT 26.250 99.116 Td /F1 9.8 Tf [(William Ondo, MD \(Baylor College of Medicine, Houston, Texas, USA\); Justo Garcia de Yebenes, MD, Monica Bascunana )] TJ ET BT 26.250 87.211 Td /F1 9.8 Tf [(Garde, Marta Fatas, BA, and Asuncion Martinez-Descales \(Hospital Ramn y Cajal, Madrid, Spain\); Wayne Martin, MD, Pamela )] TJ ET BT 26.250 75.306 Td /F1 9.8 Tf [(King, BScN, RN, and Satwinder Sran, BSC \(University of Alberta, Edmonton, Alberta, Canada\); Anwar Ahmed, PhD, Stephen )] TJ ET BT 26.250 63.402 Td /F1 9.8 Tf [(Rao, PhD, Christine Reece, BS, Janice Zimbelman, PhD, PT, Alexandra Bea, BA, Emily Newman, BA, and Alex Bura, BA )] TJ ET BT 26.250 51.497 Td /F1 9.8 Tf [(\(Cleveland Clinic Foundation, Cleveland, Ohio, USA\).)] 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 Huntington Disease)] TJ ET Q endstream endobj 239 0 obj << /Type /Page /Parent 3 0 R /Contents 240 0 R >> endobj 240 0 obj << /Length 25153 >> stream 0.271 0.267 0.267 rg q 15.000 27.834 577.500 749.166 re W n 0.271 0.267 0.267 rg BT 26.250 767.476 Td /F4 9.8 Tf [(Steering Committee)] TJ ET BT 26.250 748.071 Td /F1 9.8 Tf [(Jane Paulsen, PhD, Principal Investigator, Eric A. Epping, MD, PhD, Hans Johnson, PhD, Megan Smith, PhD, Janet Williams, )] TJ ET BT 26.250 736.167 Td /F1 9.8 Tf [(PhD, RN, FAAN, Leigh Beglinger, PhD, James Mills, MS \(University of Iowa Hospitals and Clinics, Iowa City, IA\); Elizabeth )] TJ ET BT 26.250 724.262 Td /F1 9.8 Tf [(Aylward, PhD \(Seattle Childrens Research Institute, WA\); Kevin Biglan, MD \(University of Rochester, Rochester, NY\); Blair )] TJ ET BT 26.250 712.357 Td /F1 9.8 Tf [(Leavitt, MD \(University of British Columbia, Vancouver, BC, Canada\); Marcy MacDonald, PhD \(Massachusetts General )] TJ ET BT 26.250 700.452 Td /F1 9.8 Tf [(Hospital\); Martha Nance, MD \(Hennepin County Medical Center, Minneapolis, MN\); and Cheryl Erwin, JD, PhD \(University of )] TJ ET BT 26.250 688.548 Td /F1 9.8 Tf [(Texas Medical School at Houston\).)] TJ ET BT 26.250 669.143 Td /F4 9.8 Tf [(Scientific Sections)] TJ ET BT 26.250 649.738 Td /F4 9.8 Tf [(Bio Markers: )] TJ ET BT 88.016 649.738 Td /F1 9.8 Tf [( Blair Leavitt, MDCM, FRCPC \(Chair\) and Michael Hayden, PhD \(University of British Columbia\); Stefano )] TJ ET BT 26.250 637.833 Td /F1 9.8 Tf [(DiDonato, MD \(Neurological Institute C. Besta, Italy\); Ken Evans, PhD \(Ontario Cancer Biomarker Network\); Wayne Matson, )] TJ ET BT 26.250 625.929 Td /F1 9.8 Tf [(PhD \(VA Medical Center, Bedford, MA\); Asa Peterson, MD, PhD \(Lund University, Sweden\), Sarah Tabrizi, MD, PhD \(National )] TJ ET BT 26.250 614.024 Td /F1 9.8 Tf [(Hospital for Neurology and Neurology and Neurosurgery, London\); Beth Borowsky, PhD \(CHDI\); Andrew Juhl, BS, James Mills, )] TJ ET BT 26.250 602.119 Td /F1 9.8 Tf [(MS, Kai Wang, PhD \(University of Iowa\); and David Weir, BSc \(University of British Columbia\).)] TJ ET BT 26.250 582.714 Td /F4 9.8 Tf [(Brain:)] TJ ET BT 54.418 582.714 Td /F1 9.8 Tf [( Jean Paul Vonsattell, PhD \(Chair\), and Carol Moskowitz, ANP, MS \(Columbia University Medical Center\); Anne )] TJ ET BT 26.250 570.810 Td /F1 9.8 Tf [(Leserman, MSW, LISW, Lynn Schaul, BA, and Stacie Vik, BA \(University of Iowa\).)] TJ ET BT 26.250 551.405 Td /F4 9.8 Tf [(Cognitive:)] TJ ET BT 73.918 551.405 Td /F1 9.8 Tf [( Deborah Harrington, PhD \(Chair\), Gabriel Castillo, BS, Jessica Morison, BS, and Jason Reed, BS \(University of )] TJ ET BT 26.250 539.500 Td /F1 9.8 Tf [(California, San Diego\), Michael Diaz, PhD, Ian Dobbins, PhD, Tamara Hershey, PhD, Erin Foster, OTD, and Deborah Moore, )] TJ ET BT 26.250 527.595 Td /F1 9.8 Tf [(BA \(Washington University Cognitive Science Battery Development\); Holly Westervelt, PhD \(Chair, Quality Control and )] TJ ET BT 26.250 515.691 Td /F1 9.8 Tf [(Training, Alpert Medical School of Brown University\), Jennifer Davis, PhD, and Geoff Tremont, PhD, MS \(Scientific Consultants, )] TJ ET BT 26.250 503.786 Td /F1 9.8 Tf [(Alpert Medical School of Brown University\); Megan Smith, PhD \(Chair, Administration\), David J. Moser, PhD, Leigh J. Beglinger, )] TJ ET BT 26.250 491.881 Td /F1 9.8 Tf [(PhD, Kelly Rowe, and Danielle Theriault, BS \(University of Iowa\); Carissa Gehl, PhD \(VA Medical Center, Iowa City, IA\); Kirsty )] TJ ET BT 26.250 479.976 Td /F1 9.8 Tf [(Matheson \(University of Aberdeen\); Karen Siedlecki, PhD \(Fordham University\); Marleen Van Walsem \(EHDN\); Susan Bonner, )] TJ ET BT 26.250 468.072 Td /F1 9.8 Tf [(BA, Greg Elias, BA, and Melanie Faust, BS \(Rhode Island Hospital\); Beth Borowski, PhD \(CHDI\); Noelle Carlozzi \(University of )] TJ ET BT 26.250 456.167 Td /F1 9.8 Tf [(Michigan\); Kevin Duff, PhD \(University of Utah\); Nellie Georgiou-Karistianis \(St. Vincents Hospital, The University of Melbourne, )] TJ ET BT 26.250 444.262 Td /F1 9.8 Tf [(Australia\); Julie Stout, PhD \(Monash University, Melbourne, Australia\); Herwig Lange \(Air-Rahazentrum\); and Kate Papp )] TJ ET BT 26.250 432.357 Td /F1 9.8 Tf [(\(University of Connecticut\).)] TJ ET BT 26.250 412.953 Td /F4 9.8 Tf [(Functional)] TJ ET BT 75.546 412.953 Td /F1 9.8 Tf [( : Janet Williams, PhD \(Chair\), Leigh J. Beglinger, PhD, Anne Leserman, MSW, LISW, Eunyoe Ro, MA, Lee Anna )] TJ ET BT 26.250 401.048 Td /F1 9.8 Tf [(Clark, Nancy Downing, RN, PhD, Joan Laing, PhD, Kristine Rees, BA, and Stacie Vik, BA \(University of Iowa\); Rebecca Ready, )] TJ ET BT 26.250 389.143 Td /F1 9.8 Tf [(PhD \(University of Massachusetts\); Anthony Vaccarino, PhD \(Ontario Cancer Biomarker Network\); Sarah Farias, PhD )] TJ ET BT 26.250 377.238 Td /F1 9.8 Tf [(\(University of California, Davis\); Noelle Carlozzi, PhD \(University of Michigan\); and Carissa Gehl, PhD \(VA Medical Center, Iowa )] TJ ET BT 26.250 365.334 Td /F1 9.8 Tf [(City, IA\).)] TJ ET BT 26.250 345.929 Td /F4 9.8 Tf [(Genetics:)] TJ ET BT 70.681 345.929 Td /F1 9.8 Tf [( Marcy MacDonald, PhD \(Co-Chair\), Jim Gusella, PhD, and Rick Myers, PhD \(Massachusetts General Hospital\); )] TJ ET BT 26.250 334.024 Td /F1 9.8 Tf [(Michael Hayden, PhD \(University of British Columbia\); Tom Wassink, MD \(Co-Chair\) Eric A. Epping, MD, PhD, Andrew Juhl, )] TJ ET BT 26.250 322.119 Td /F1 9.8 Tf [(BA, James Mills, MS, and Kai Wang, PhD \(University of Iowa\); Zosia Miedzybrodzka, MD, PhD \(University of Aberdeen\); and )] TJ ET BT 26.250 310.215 Td /F1 9.8 Tf [(Christopher Ross, MD, PhD \(Johns Hopkins University\).)] TJ ET BT 26.250 290.810 Td /F4 9.8 Tf [(Imaging:)] TJ ET BT 66.878 290.810 Td /F5 9.8 Tf [(Administrative:)] TJ ET BT 130.809 290.810 Td /F1 9.8 Tf [( Ron Pierson, PhD \(Chair\), Kathy Jones, BS, Jacquie Marietta, BS, William McDowell, AA, Greg Harris, )] TJ ET BT 26.250 278.905 Td /F1 9.8 Tf [(BS, Eun Young Kim, MS, Hans Johnson, PhD, and Thomas Wassink, MD \(University of Iowa\); John Ashburner, PhD )] TJ ET BT 26.250 267.000 Td /F1 9.8 Tf [(\(Functional Imaging Lab, London\); Steve Potkin, MD \(University of California, Irvine\); and Arthur Toga, PhD \(University of )] TJ ET BT 26.250 255.096 Td /F1 9.8 Tf [(California, Los Angeles\). )] TJ ET BT 135.167 255.096 Td /F5 9.8 Tf [(Striatal:)] TJ ET BT 168.220 255.096 Td /F1 9.8 Tf [( Elizabeth Aylward, PhD \(Chair, Seattle Childrens Research Institute\). )] TJ ET BT 473.824 255.096 Td /F5 9.8 Tf [(Surface Analysis:)] TJ ET BT 549.143 255.096 Td /F1 9.8 Tf [( Eric )] TJ ET BT 26.250 243.191 Td /F1 9.8 Tf [(Axelson, BSE \(University of Iowa\). )] TJ ET BT 177.424 243.191 Td /F5 9.8 Tf [(Shape Analysis:)] TJ ET BT 247.331 243.191 Td /F1 9.8 Tf [( Christopher A. Ross \(Chair\), MD, PhD, Michael Miller, PhD, and Sarah )] TJ ET BT 26.250 231.286 Td /F1 9.8 Tf [(Reading, MD \(Johns Hopkins University\); Mirza Faisal Beg, PhD \(Simon Fraser University\). )] TJ ET BT 422.831 231.286 Td /F5 9.8 Tf [(DTI: )] TJ ET BT 443.959 231.286 Td /F1 9.8 Tf [( Vincent A. Magnotta, PhD )] TJ ET BT 26.250 219.381 Td /F1 9.8 Tf [(\(Chair, University of Iowa\); Karl Helmer, PhD \(Massachusetts General Hospital\); Kelvin Lim, MD \(University of Ulm, Germany\); )] TJ ET BT 26.250 207.477 Td /F1 9.8 Tf [(Mark Lowe, PhD \(Cleveland Clinic\); Sasumu Mori, PhD \(Johns Hopkins University\); Allen Song, PhD \(Duke University\); and )] TJ ET BT 26.250 195.572 Td /F1 9.8 Tf [(Jessica Turner, PhD \(University of California, Irvine\). )] TJ ET BT 255.970 195.572 Td /F5 9.8 Tf [(fMRI:)] TJ ET BT 279.263 195.572 Td /F1 9.8 Tf [( Steve Rao, PhD \(Chair\), Erik Beall, PhD, Katherine Koenig, PhD, )] TJ ET BT 26.250 183.667 Td /F1 9.8 Tf [(Michael Phillips, MD, Christine Reece, BS, and Jan Zimbelman, PhD, PT \(Cleveland Clinic\); and April Bryant \(University of )] TJ ET BT 26.250 171.762 Td /F1 9.8 Tf [(Iowa\).)] TJ ET BT 26.250 152.358 Td /F4 9.8 Tf [(Motor:)] TJ ET BT 56.573 152.358 Td /F1 9.8 Tf [( Kevin Biglan, MD \(University of Rochester\), Karen Marder, MD \(Columbia University\), and Jody Corey-Bloom, MD, PhD )] TJ ET BT 26.250 140.453 Td /F1 9.8 Tf [(\(University of California, San Diego\) all Co-Chairs; Michael Geschwind, MD, PhD \(University of California, San Francisco\); Ralf )] TJ ET BT 26.250 128.548 Td /F1 9.8 Tf [(Reilmann, MD and Zerka Unds \(Muenster, Germany\); and Andrew Juhl, BS \(University of Iowa\).)] TJ ET Q q 15.000 27.834 577.500 749.166 re W n 0.271 0.267 0.267 rg BT 26.250 767.476 Td /F4 9.8 Tf [(Steering Committee)] TJ ET BT 26.250 748.071 Td /F1 9.8 Tf [(Jane Paulsen, PhD, Principal Investigator, Eric A. Epping, MD, PhD, Hans Johnson, PhD, Megan Smith, PhD, Janet Williams, )] TJ ET BT 26.250 736.167 Td /F1 9.8 Tf [(PhD, RN, FAAN, Leigh Beglinger, PhD, James Mills, MS \(University of Iowa Hospitals and Clinics, Iowa City, IA\); Elizabeth )] TJ ET BT 26.250 724.262 Td /F1 9.8 Tf [(Aylward, PhD \(Seattle Childrens Research Institute, WA\); Kevin Biglan, MD \(University of Rochester, Rochester, NY\); Blair )] TJ ET BT 26.250 712.357 Td /F1 9.8 Tf [(Leavitt, MD \(University of British Columbia, Vancouver, BC, Canada\); Marcy MacDonald, PhD \(Massachusetts General )] TJ ET BT 26.250 700.452 Td /F1 9.8 Tf [(Hospital\); Martha Nance, MD \(Hennepin County Medical Center, Minneapolis, MN\); and Cheryl Erwin, JD, PhD \(University of )] TJ ET BT 26.250 688.548 Td /F1 9.8 Tf [(Texas Medical School at Houston\).)] TJ ET BT 26.250 669.143 Td /F4 9.8 Tf [(Scientific Sections)] TJ ET BT 26.250 649.738 Td /F4 9.8 Tf [(Bio Markers: )] TJ ET BT 88.016 649.738 Td /F1 9.8 Tf [( Blair Leavitt, MDCM, FRCPC \(Chair\) and Michael Hayden, PhD \(University of British Columbia\); Stefano )] TJ ET BT 26.250 637.833 Td /F1 9.8 Tf [(DiDonato, MD \(Neurological Institute C. Besta, Italy\); Ken Evans, PhD \(Ontario Cancer Biomarker Network\); Wayne Matson, )] TJ ET BT 26.250 625.929 Td /F1 9.8 Tf [(PhD \(VA Medical Center, Bedford, MA\); Asa Peterson, MD, PhD \(Lund University, Sweden\), Sarah Tabrizi, MD, PhD \(National )] TJ ET BT 26.250 614.024 Td /F1 9.8 Tf [(Hospital for Neurology and Neurology and Neurosurgery, London\); Beth Borowsky, PhD \(CHDI\); Andrew Juhl, BS, James Mills, )] TJ ET BT 26.250 602.119 Td /F1 9.8 Tf [(MS, Kai Wang, PhD \(University of Iowa\); and David Weir, BSc \(University of British Columbia\).)] TJ ET BT 26.250 582.714 Td /F4 9.8 Tf [(Brain:)] TJ ET BT 54.418 582.714 Td /F1 9.8 Tf [( Jean Paul Vonsattell, PhD \(Chair\), and Carol Moskowitz, ANP, MS \(Columbia University Medical Center\); Anne )] TJ ET BT 26.250 570.810 Td /F1 9.8 Tf [(Leserman, MSW, LISW, Lynn Schaul, BA, and Stacie Vik, BA \(University of Iowa\).)] TJ ET BT 26.250 551.405 Td /F4 9.8 Tf [(Cognitive:)] TJ ET BT 73.918 551.405 Td /F1 9.8 Tf [( Deborah Harrington, PhD \(Chair\), Gabriel Castillo, BS, Jessica Morison, BS, and Jason Reed, BS \(University of )] TJ ET BT 26.250 539.500 Td /F1 9.8 Tf [(California, San Diego\), Michael Diaz, PhD, Ian Dobbins, PhD, Tamara Hershey, PhD, Erin Foster, OTD, and Deborah Moore, )] TJ ET BT 26.250 527.595 Td /F1 9.8 Tf [(BA \(Washington University Cognitive Science Battery Development\); Holly Westervelt, PhD \(Chair, Quality Control and )] TJ ET BT 26.250 515.691 Td /F1 9.8 Tf [(Training, Alpert Medical School of Brown University\), Jennifer Davis, PhD, and Geoff Tremont, PhD, MS \(Scientific Consultants, )] TJ ET BT 26.250 503.786 Td /F1 9.8 Tf [(Alpert Medical School of Brown University\); Megan Smith, PhD \(Chair, Administration\), David J. Moser, PhD, Leigh J. Beglinger, )] TJ ET BT 26.250 491.881 Td /F1 9.8 Tf [(PhD, Kelly Rowe, and Danielle Theriault, BS \(University of Iowa\); Carissa Gehl, PhD \(VA Medical Center, Iowa City, IA\); Kirsty )] TJ ET BT 26.250 479.976 Td /F1 9.8 Tf [(Matheson \(University of Aberdeen\); Karen Siedlecki, PhD \(Fordham University\); Marleen Van Walsem \(EHDN\); Susan Bonner, )] TJ ET BT 26.250 468.072 Td /F1 9.8 Tf [(BA, Greg Elias, BA, and Melanie Faust, BS \(Rhode Island Hospital\); Beth Borowski, PhD \(CHDI\); Noelle Carlozzi \(University of )] TJ ET BT 26.250 456.167 Td /F1 9.8 Tf [(Michigan\); Kevin Duff, PhD \(University of Utah\); Nellie Georgiou-Karistianis \(St. Vincents Hospital, The University of Melbourne, )] TJ ET BT 26.250 444.262 Td /F1 9.8 Tf [(Australia\); Julie Stout, PhD \(Monash University, Melbourne, Australia\); Herwig Lange \(Air-Rahazentrum\); and Kate Papp )] TJ ET BT 26.250 432.357 Td /F1 9.8 Tf [(\(University of Connecticut\).)] TJ ET BT 26.250 412.953 Td /F4 9.8 Tf [(Functional)] TJ ET BT 75.546 412.953 Td /F1 9.8 Tf [( : Janet Williams, PhD \(Chair\), Leigh J. Beglinger, PhD, Anne Leserman, MSW, LISW, Eunyoe Ro, MA, Lee Anna )] TJ ET BT 26.250 401.048 Td /F1 9.8 Tf [(Clark, Nancy Downing, RN, PhD, Joan Laing, PhD, Kristine Rees, BA, and Stacie Vik, BA \(University of Iowa\); Rebecca Ready, )] TJ ET BT 26.250 389.143 Td /F1 9.8 Tf [(PhD \(University of Massachusetts\); Anthony Vaccarino, PhD \(Ontario Cancer Biomarker Network\); Sarah Farias, PhD )] TJ ET BT 26.250 377.238 Td /F1 9.8 Tf [(\(University of California, Davis\); Noelle Carlozzi, PhD \(University of Michigan\); and Carissa Gehl, PhD \(VA Medical Center, Iowa )] TJ ET BT 26.250 365.334 Td /F1 9.8 Tf [(City, IA\).)] TJ ET BT 26.250 345.929 Td /F4 9.8 Tf [(Genetics:)] TJ ET BT 70.681 345.929 Td /F1 9.8 Tf [( Marcy MacDonald, PhD \(Co-Chair\), Jim Gusella, PhD, and Rick Myers, PhD \(Massachusetts General Hospital\); )] TJ ET BT 26.250 334.024 Td /F1 9.8 Tf [(Michael Hayden, PhD \(University of British Columbia\); Tom Wassink, MD \(Co-Chair\) Eric A. Epping, MD, PhD, Andrew Juhl, )] TJ ET BT 26.250 322.119 Td /F1 9.8 Tf [(BA, James Mills, MS, and Kai Wang, PhD \(University of Iowa\); Zosia Miedzybrodzka, MD, PhD \(University of Aberdeen\); and )] TJ ET BT 26.250 310.215 Td /F1 9.8 Tf [(Christopher Ross, MD, PhD \(Johns Hopkins University\).)] TJ ET BT 26.250 290.810 Td /F4 9.8 Tf [(Imaging:)] TJ ET BT 66.878 290.810 Td /F5 9.8 Tf [(Administrative:)] TJ ET BT 130.809 290.810 Td /F1 9.8 Tf [( Ron Pierson, PhD \(Chair\), Kathy Jones, BS, Jacquie Marietta, BS, William McDowell, AA, Greg Harris, )] TJ ET BT 26.250 278.905 Td /F1 9.8 Tf [(BS, Eun Young Kim, MS, Hans Johnson, PhD, and Thomas Wassink, MD \(University of Iowa\); John Ashburner, PhD )] TJ ET BT 26.250 267.000 Td /F1 9.8 Tf [(\(Functional Imaging Lab, London\); Steve Potkin, MD \(University of California, Irvine\); and Arthur Toga, PhD \(University of )] TJ ET BT 26.250 255.096 Td /F1 9.8 Tf [(California, Los Angeles\). )] TJ ET BT 135.167 255.096 Td /F5 9.8 Tf [(Striatal:)] TJ ET BT 168.220 255.096 Td /F1 9.8 Tf [( Elizabeth Aylward, PhD \(Chair, Seattle Childrens Research Institute\). )] TJ ET BT 473.824 255.096 Td /F5 9.8 Tf [(Surface Analysis:)] TJ ET BT 549.143 255.096 Td /F1 9.8 Tf [( Eric )] TJ ET BT 26.250 243.191 Td /F1 9.8 Tf [(Axelson, BSE \(University of Iowa\). )] TJ ET BT 177.424 243.191 Td /F5 9.8 Tf [(Shape Analysis:)] TJ ET BT 247.331 243.191 Td /F1 9.8 Tf [( Christopher A. Ross \(Chair\), MD, PhD, Michael Miller, PhD, and Sarah )] TJ ET BT 26.250 231.286 Td /F1 9.8 Tf [(Reading, MD \(Johns Hopkins University\); Mirza Faisal Beg, PhD \(Simon Fraser University\). )] TJ ET BT 422.831 231.286 Td /F5 9.8 Tf [(DTI: )] TJ ET BT 443.959 231.286 Td /F1 9.8 Tf [( Vincent A. Magnotta, PhD )] TJ ET BT 26.250 219.381 Td /F1 9.8 Tf [(\(Chair, University of Iowa\); Karl Helmer, PhD \(Massachusetts General Hospital\); Kelvin Lim, MD \(University of Ulm, Germany\); )] TJ ET BT 26.250 207.477 Td /F1 9.8 Tf [(Mark Lowe, PhD \(Cleveland Clinic\); Sasumu Mori, PhD \(Johns Hopkins University\); Allen Song, PhD \(Duke University\); and )] TJ ET BT 26.250 195.572 Td /F1 9.8 Tf [(Jessica Turner, PhD \(University of California, Irvine\). )] TJ ET BT 255.970 195.572 Td /F5 9.8 Tf [(fMRI:)] TJ ET BT 279.263 195.572 Td /F1 9.8 Tf [( Steve Rao, PhD \(Chair\), Erik Beall, PhD, Katherine Koenig, PhD, )] TJ ET BT 26.250 183.667 Td /F1 9.8 Tf [(Michael Phillips, MD, Christine Reece, BS, and Jan Zimbelman, PhD, PT \(Cleveland Clinic\); and April Bryant \(University of )] TJ ET BT 26.250 171.762 Td /F1 9.8 Tf [(Iowa\).)] TJ ET BT 26.250 152.358 Td /F4 9.8 Tf [(Motor:)] TJ ET BT 56.573 152.358 Td /F1 9.8 Tf [( Kevin Biglan, MD \(University of Rochester\), Karen Marder, MD \(Columbia University\), and Jody Corey-Bloom, MD, PhD )] TJ ET BT 26.250 140.453 Td /F1 9.8 Tf [(\(University of California, San Diego\) all Co-Chairs; Michael Geschwind, MD, PhD \(University of California, San Francisco\); Ralf )] TJ ET BT 26.250 128.548 Td /F1 9.8 Tf [(Reilmann, MD and Zerka Unds \(Muenster, Germany\); and Andrew Juhl, BS \(University of Iowa\).)] TJ ET Q q 15.000 27.834 577.500 749.166 re W n 0.271 0.267 0.267 rg BT 26.250 767.476 Td /F4 9.8 Tf [(Steering Committee)] TJ ET BT 26.250 748.071 Td /F1 9.8 Tf [(Jane Paulsen, PhD, Principal Investigator, Eric A. Epping, MD, PhD, Hans Johnson, PhD, Megan Smith, PhD, Janet Williams, )] TJ ET BT 26.250 736.167 Td /F1 9.8 Tf [(PhD, RN, FAAN, Leigh Beglinger, PhD, James Mills, MS \(University of Iowa Hospitals and Clinics, Iowa City, IA\); Elizabeth )] TJ ET BT 26.250 724.262 Td /F1 9.8 Tf [(Aylward, PhD \(Seattle Childrens Research Institute, WA\); Kevin Biglan, MD \(University of Rochester, Rochester, NY\); Blair )] TJ ET BT 26.250 712.357 Td /F1 9.8 Tf [(Leavitt, MD \(University of British Columbia, Vancouver, BC, Canada\); Marcy MacDonald, PhD \(Massachusetts General )] TJ ET BT 26.250 700.452 Td /F1 9.8 Tf [(Hospital\); Martha Nance, MD \(Hennepin County Medical Center, Minneapolis, MN\); and Cheryl Erwin, JD, PhD \(University of )] TJ ET BT 26.250 688.548 Td /F1 9.8 Tf [(Texas Medical School at Houston\).)] TJ ET BT 26.250 669.143 Td /F4 9.8 Tf [(Scientific Sections)] TJ ET BT 26.250 649.738 Td /F4 9.8 Tf [(Bio Markers: )] TJ ET BT 88.016 649.738 Td /F1 9.8 Tf [( Blair Leavitt, MDCM, FRCPC \(Chair\) and Michael Hayden, PhD \(University of British Columbia\); Stefano )] TJ ET BT 26.250 637.833 Td /F1 9.8 Tf [(DiDonato, MD \(Neurological Institute C. Besta, Italy\); Ken Evans, PhD \(Ontario Cancer Biomarker Network\); Wayne Matson, )] TJ ET BT 26.250 625.929 Td /F1 9.8 Tf [(PhD \(VA Medical Center, Bedford, MA\); Asa Peterson, MD, PhD \(Lund University, Sweden\), Sarah Tabrizi, MD, PhD \(National )] TJ ET BT 26.250 614.024 Td /F1 9.8 Tf [(Hospital for Neurology and Neurology and Neurosurgery, London\); Beth Borowsky, PhD \(CHDI\); Andrew Juhl, BS, James Mills, )] TJ ET BT 26.250 602.119 Td /F1 9.8 Tf [(MS, Kai Wang, PhD \(University of Iowa\); and David Weir, BSc \(University of British Columbia\).)] TJ ET BT 26.250 582.714 Td /F4 9.8 Tf [(Brain:)] TJ ET BT 54.418 582.714 Td /F1 9.8 Tf [( Jean Paul Vonsattell, PhD \(Chair\), and Carol Moskowitz, ANP, MS \(Columbia University Medical Center\); Anne )] TJ ET BT 26.250 570.810 Td /F1 9.8 Tf [(Leserman, MSW, LISW, Lynn Schaul, BA, and Stacie Vik, BA \(University of Iowa\).)] TJ ET BT 26.250 551.405 Td /F4 9.8 Tf [(Cognitive:)] TJ ET BT 73.918 551.405 Td /F1 9.8 Tf [( Deborah Harrington, PhD \(Chair\), Gabriel Castillo, BS, Jessica Morison, BS, and Jason Reed, BS \(University of )] TJ ET BT 26.250 539.500 Td /F1 9.8 Tf [(California, San Diego\), Michael Diaz, PhD, Ian Dobbins, PhD, Tamara Hershey, PhD, Erin Foster, OTD, and Deborah Moore, )] TJ ET BT 26.250 527.595 Td /F1 9.8 Tf [(BA \(Washington University Cognitive Science Battery Development\); Holly Westervelt, PhD \(Chair, Quality Control and )] TJ ET BT 26.250 515.691 Td /F1 9.8 Tf [(Training, Alpert Medical School of Brown University\), Jennifer Davis, PhD, and Geoff Tremont, PhD, MS \(Scientific Consultants, )] TJ ET BT 26.250 503.786 Td /F1 9.8 Tf [(Alpert Medical School of Brown University\); Megan Smith, PhD \(Chair, Administration\), David J. Moser, PhD, Leigh J. Beglinger, )] TJ ET BT 26.250 491.881 Td /F1 9.8 Tf [(PhD, Kelly Rowe, and Danielle Theriault, BS \(University of Iowa\); Carissa Gehl, PhD \(VA Medical Center, Iowa City, IA\); Kirsty )] TJ ET BT 26.250 479.976 Td /F1 9.8 Tf [(Matheson \(University of Aberdeen\); Karen Siedlecki, PhD \(Fordham University\); Marleen Van Walsem \(EHDN\); Susan Bonner, )] TJ ET BT 26.250 468.072 Td /F1 9.8 Tf [(BA, Greg Elias, BA, and Melanie Faust, BS \(Rhode Island Hospital\); Beth Borowski, PhD \(CHDI\); Noelle Carlozzi \(University of )] TJ ET BT 26.250 456.167 Td /F1 9.8 Tf [(Michigan\); Kevin Duff, PhD \(University of Utah\); Nellie Georgiou-Karistianis \(St. Vincents Hospital, The University of Melbourne, )] TJ ET BT 26.250 444.262 Td /F1 9.8 Tf [(Australia\); Julie Stout, PhD \(Monash University, Melbourne, Australia\); Herwig Lange \(Air-Rahazentrum\); and Kate Papp )] TJ ET BT 26.250 432.357 Td /F1 9.8 Tf [(\(University of Connecticut\).)] TJ ET BT 26.250 412.953 Td /F4 9.8 Tf [(Functional)] TJ ET BT 75.546 412.953 Td /F1 9.8 Tf [( : Janet Williams, PhD \(Chair\), Leigh J. Beglinger, PhD, Anne Leserman, MSW, LISW, Eunyoe Ro, MA, Lee Anna )] TJ ET BT 26.250 401.048 Td /F1 9.8 Tf [(Clark, Nancy Downing, RN, PhD, Joan Laing, PhD, Kristine Rees, BA, and Stacie Vik, BA \(University of Iowa\); Rebecca Ready, )] TJ ET BT 26.250 389.143 Td /F1 9.8 Tf [(PhD \(University of Massachusetts\); Anthony Vaccarino, PhD \(Ontario Cancer Biomarker Network\); Sarah Farias, PhD )] TJ ET BT 26.250 377.238 Td /F1 9.8 Tf [(\(University of California, Davis\); Noelle Carlozzi, PhD \(University of Michigan\); and Carissa Gehl, PhD \(VA Medical Center, Iowa )] TJ ET BT 26.250 365.334 Td /F1 9.8 Tf [(City, IA\).)] TJ ET BT 26.250 345.929 Td /F4 9.8 Tf [(Genetics:)] TJ ET BT 70.681 345.929 Td /F1 9.8 Tf [( Marcy MacDonald, PhD \(Co-Chair\), Jim Gusella, PhD, and Rick Myers, PhD \(Massachusetts General Hospital\); )] TJ ET BT 26.250 334.024 Td /F1 9.8 Tf [(Michael Hayden, PhD \(University of British Columbia\); Tom Wassink, MD \(Co-Chair\) Eric A. Epping, MD, PhD, Andrew Juhl, )] TJ ET BT 26.250 322.119 Td /F1 9.8 Tf [(BA, James Mills, MS, and Kai Wang, PhD \(University of Iowa\); Zosia Miedzybrodzka, MD, PhD \(University of Aberdeen\); and )] TJ ET BT 26.250 310.215 Td /F1 9.8 Tf [(Christopher Ross, MD, PhD \(Johns Hopkins University\).)] TJ ET BT 26.250 290.810 Td /F4 9.8 Tf [(Imaging:)] TJ ET BT 66.878 290.810 Td /F5 9.8 Tf [(Administrative:)] TJ ET BT 130.809 290.810 Td /F1 9.8 Tf [( Ron Pierson, PhD \(Chair\), Kathy Jones, BS, Jacquie Marietta, BS, William McDowell, AA, Greg Harris, )] TJ ET BT 26.250 278.905 Td /F1 9.8 Tf [(BS, Eun Young Kim, MS, Hans Johnson, PhD, and Thomas Wassink, MD \(University of Iowa\); John Ashburner, PhD )] TJ ET BT 26.250 267.000 Td /F1 9.8 Tf [(\(Functional Imaging Lab, London\); Steve Potkin, MD \(University of California, Irvine\); and Arthur Toga, PhD \(University of )] TJ ET BT 26.250 255.096 Td /F1 9.8 Tf [(California, Los Angeles\). )] TJ ET BT 135.167 255.096 Td /F5 9.8 Tf [(Striatal:)] TJ ET BT 168.220 255.096 Td /F1 9.8 Tf [( Elizabeth Aylward, PhD \(Chair, Seattle Childrens Research Institute\). )] TJ ET BT 473.824 255.096 Td /F5 9.8 Tf [(Surface Analysis:)] TJ ET BT 549.143 255.096 Td /F1 9.8 Tf [( Eric )] TJ ET BT 26.250 243.191 Td /F1 9.8 Tf [(Axelson, BSE \(University of Iowa\). )] TJ ET BT 177.424 243.191 Td /F5 9.8 Tf [(Shape Analysis:)] TJ ET BT 247.331 243.191 Td /F1 9.8 Tf [( Christopher A. Ross \(Chair\), MD, PhD, Michael Miller, PhD, and Sarah )] TJ ET BT 26.250 231.286 Td /F1 9.8 Tf [(Reading, MD \(Johns Hopkins University\); Mirza Faisal Beg, PhD \(Simon Fraser University\). )] TJ ET BT 422.831 231.286 Td /F5 9.8 Tf [(DTI: )] TJ ET BT 443.959 231.286 Td /F1 9.8 Tf [( Vincent A. Magnotta, PhD )] TJ ET BT 26.250 219.381 Td /F1 9.8 Tf [(\(Chair, University of Iowa\); Karl Helmer, PhD \(Massachusetts General Hospital\); Kelvin Lim, MD \(University of Ulm, Germany\); )] TJ ET BT 26.250 207.477 Td /F1 9.8 Tf [(Mark Lowe, PhD \(Cleveland Clinic\); Sasumu Mori, PhD \(Johns Hopkins University\); Allen Song, PhD \(Duke University\); and )] TJ ET BT 26.250 195.572 Td /F1 9.8 Tf [(Jessica Turner, PhD \(University of California, Irvine\). )] TJ ET BT 255.970 195.572 Td /F5 9.8 Tf [(fMRI:)] TJ ET BT 279.263 195.572 Td /F1 9.8 Tf [( Steve Rao, PhD \(Chair\), Erik Beall, PhD, Katherine Koenig, PhD, )] TJ ET BT 26.250 183.667 Td /F1 9.8 Tf [(Michael Phillips, MD, Christine Reece, BS, and Jan Zimbelman, PhD, PT \(Cleveland Clinic\); and April Bryant \(University of )] TJ ET BT 26.250 171.762 Td /F1 9.8 Tf [(Iowa\).)] TJ ET BT 26.250 152.358 Td /F4 9.8 Tf [(Motor:)] TJ ET BT 56.573 152.358 Td /F1 9.8 Tf [( Kevin Biglan, MD \(University of Rochester\), Karen Marder, MD \(Columbia University\), and Jody Corey-Bloom, MD, PhD )] TJ ET BT 26.250 140.453 Td /F1 9.8 Tf [(\(University of California, San Diego\) all Co-Chairs; Michael Geschwind, MD, PhD \(University of California, San Francisco\); Ralf )] TJ ET BT 26.250 128.548 Td /F1 9.8 Tf [(Reilmann, MD and Zerka Unds \(Muenster, Germany\); and Andrew Juhl, BS \(University of Iowa\).)] 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 Huntington Disease)] TJ ET Q endstream endobj 241 0 obj << /Type /Page /Parent 3 0 R /Contents 242 0 R >> endobj 242 0 obj << /Length 22060 >> stream 0.271 0.267 0.267 rg q 15.000 46.634 577.500 730.366 re W n 0.271 0.267 0.267 rg BT 26.250 767.476 Td /F4 9.8 Tf [(Psychiatric:)] TJ ET BT 81.523 767.476 Td /F1 9.8 Tf [( Eric A. Epping, MD, PhD \(Chair\), Nancy Downing, RN, PhD, Jess Fiedorowicz, MD, Robert Robinson, MD, Megan )] TJ ET BT 26.250 755.571 Td /F1 9.8 Tf [(Smith, PhD, Leigh Beglinger, PhD, James Mills, MS, Kristine Rees, BA, Adam Ruggle, Stacie Vik, BA, Janet Williams, PhD, )] TJ ET BT 26.250 743.667 Td /F1 9.8 Tf [(Dawei Liu, PhD, David Moser, PhD, and Kelly Rowe \(University of Iowa\); Karen Anderson, MD \(University of Maryland\); David )] TJ ET BT 26.250 731.762 Td /F1 9.8 Tf [(Craufurd, MD \(University of Manchester\); Mark Groves, MD \(Columbia University\); Anthony Vaccarino, PhD and Ken Evans, )] TJ ET BT 26.250 719.857 Td /F1 9.8 Tf [(PhD \(Ontario Cancer Biomarker Network\); Hugh Rickards, MD \(Queen Elizabeth Psychiatric Hospital\); Eric van Duijn, MD )] TJ ET BT 26.250 707.952 Td /F1 9.8 Tf [(\(Leiden University Medical Center, Netherlands\); Irina Antonijevic, MD, PhD, and Joseph Giuliano \(CHDI\); Phyllis Chua \(The )] TJ ET BT 26.250 696.048 Td /F1 9.8 Tf [(University of Melbourne, Royal Melbourne Hospital\); and Kimberly Quaid, PhD \(Indiana University School of Medicine\).)] TJ ET BT 26.250 676.643 Td /F4 9.8 Tf [(Core Sections)] TJ ET BT 26.250 657.238 Td /F4 9.8 Tf [(Statistics:)] TJ ET BT 72.845 657.238 Td /F1 9.8 Tf [( James Mills, MEd, MS, Dawei Liu, PhD, Jeffrey Long, PhD, Wenjing Lu, Kai Wang, PhD, and Ying Zhang, PhD )] TJ ET BT 26.250 645.333 Td /F1 9.8 Tf [(\(University of Iowa\).)] TJ ET BT 26.250 625.929 Td /F4 9.8 Tf [(Recruitment/Retention:)] TJ ET BT 134.046 625.929 Td /F1 9.8 Tf [( Martha Nance, MD \(Chair, University of Minnesota\); Anne Leserman, MSW, LISW, Nicholas Doucette, )] TJ ET BT 26.250 614.024 Td /F1 9.8 Tf [(BA, Mycah Kimble, BA, Patricia Ryan, MSW, LISW, MA, Kelli Thumma, BA, Elijah Waterman, BA, and Jeremy Hinkel, BA )] TJ ET BT 26.250 602.119 Td /F1 9.8 Tf [(\(University of Iowa\).)] TJ ET BT 26.250 582.714 Td /F4 9.8 Tf [(Ethics:)] TJ ET BT 58.757 582.714 Td /F1 9.8 Tf [( Cheryl Erwin, JD, PhD, \(Chair, McGovern Center for Health, Humanities and the Human Spirit\); Eric A. Epping, MD, )] TJ ET BT 26.250 570.810 Td /F1 9.8 Tf [(PhD Janet Williams, PhD, Nicholas Doucette, BA, Anne Leserman, MSW, LISW, James Mills, MS, Lynn Schaul, BA, and Stacie )] TJ ET BT 26.250 558.905 Td /F1 9.8 Tf [(Vik, BA \(University of Iowa\); Martha Nance, MD \(University of Minnesota\); and Lisa Hughes, MEd \(University of Texas Medical )] TJ ET BT 26.250 547.000 Td /F1 9.8 Tf [(School at Houston\).)] TJ ET BT 26.250 527.595 Td /F4 9.8 Tf [(IT/Management:)] TJ ET BT 100.467 527.595 Td /F1 9.8 Tf [( Hans Johnson, PhD \(Chair\), R.J. Connell, BS, Karen Pease, BS, Ben Rogers, BA, BSCS, Jim Smith, AS, )] TJ ET BT 26.250 515.691 Td /F1 9.8 Tf [(Shuhua Wu, MCS, Roland Zschiegner, Erin Carney, Bill McKirgan, Mark Scully, and Ryan Wyse \(University of Iowa\); Jeremy )] TJ ET BT 26.250 503.786 Td /F1 9.8 Tf [(Bockholt \(AMBIGroup\).)] TJ ET BT 26.250 484.381 Td /F4 9.8 Tf [(Program Management)] TJ ET BT 26.250 464.976 Td /F4 9.8 Tf [(Administrative:)] TJ ET BT 97.220 464.976 Td /F1 9.8 Tf [( Chris Werling-Witkoske \(Chair\), Karla Anderson, BS, Kristine Bjork, BA, Ann Dudler, Jamy Schumacher, Sean )] TJ ET BT 26.250 453.072 Td /F1 9.8 Tf [(Thompson, BA, Leann Davis, Machelle Henneberry, Greg Ennis, MA, and Stacie Vik, BA \(University of Iowa\).)] TJ ET BT 26.250 433.667 Td /F4 9.8 Tf [(Financial:)] TJ ET BT 71.763 433.667 Td /F1 9.8 Tf [( Steve Blanchard, MSHA, Kelsey Montross, BA, and Phil Danzer \(University of Iowa\).)] TJ ET BT 26.250 397.064 Td /F4 12.0 Tf [(References)] TJ ET BT 26.250 369.610 Td /F1 9.8 Tf [(1.)] TJ ET BT 38.132 369.610 Td /F1 9.8 Tf [(Roos, R. A. \(2010\). Huntingtons disease: A clinical review. Orphanet Journal of Rare Diseases, 5\(1\), 40.)] TJ ET BT 26.250 350.205 Td /F1 9.8 Tf [(2.)] TJ ET BT 38.132 350.205 Td /F1 9.8 Tf [(Paulsen, J. S., Wang, C., Duff, K., Barker, R., Nance, M., Beglinger, L., Moser, D., Williams, J. K., Simpson, S., Langbehn, )] TJ ET BT 26.250 338.301 Td /F1 9.8 Tf [(D., van Kammen, D. P., and the PREDICT-HD Investigators of the Huntington Study Group \(2010\). Challenges assessing )] TJ ET BT 26.250 326.396 Td /F1 9.8 Tf [(clinical endpoints in early Huntington disease. Movement Disorders 25\(15\), 25952603.)] TJ ET BT 26.250 306.991 Td /F1 9.8 Tf [(3.)] TJ ET BT 38.132 306.991 Td /F1 9.8 Tf [(CDC \(2011\). Health-related quality of life. Retrieved from https://www.cdc.gov/hrqol/concept.htm.)] TJ ET BT 26.250 287.586 Td /F1 9.8 Tf [(4.)] TJ ET BT 38.132 287.586 Td /F1 9.8 Tf [(Wilson, I. B. & Cleary, P. D. \(1995\). Linking clinical variables with health-related quality of life: A conceptual model of patient )] TJ ET BT 26.250 275.682 Td /F1 9.8 Tf [(outcomes. JAMA, 273\(1\), 5965.)] TJ ET BT 26.250 256.277 Td /F1 9.8 Tf [(5.)] TJ ET BT 38.132 256.277 Td /F1 9.8 Tf [(Ferrans, C.E., Zerwic, J.J., Wilbur, J.E.,& Larson, J.L. \(2005\). Conceptual model of health-related quality of life. Journal of )] TJ ET BT 26.250 244.372 Td /F1 9.8 Tf [(Nursing Scholarship 37\(4\), 336342.)] TJ ET BT 26.250 224.967 Td /F1 9.8 Tf [(6.)] TJ ET BT 38.132 224.967 Td /F1 9.8 Tf [(Paulsen, J. S., Zhao. H., Stout, J. C., Brinkman, R.R., Guttman, M., Ross, C. A., et al. \(2001\). Clinical markers of early )] TJ ET BT 26.250 213.063 Td /F1 9.8 Tf [(disease in persons near onset of Huntington's disease. Neurology, 57\(4\):658662.)] TJ ET BT 26.250 193.658 Td /F1 9.8 Tf [(7.)] TJ ET BT 38.132 193.658 Td /F1 9.8 Tf [(Tabrizi, S. J., Langbehn, D. R., Leavitt, B. R., Roos, R. A. C., Durr, A., Craufurd, D., Kennard, C., Hicks, S. L., Fox, N. D., )] TJ ET BT 26.250 181.753 Td /F1 9.8 Tf [(Scahill, R. I., Borowsky, B., Tobin, A. J., Rosas, H. D., Johnson, H., Reimann, R., Landwehrmeyere, B., Stout, J.C., and the )] TJ ET BT 26.250 169.848 Td /F1 9.8 Tf [(TRACK-HD Investigators \(2009\). Biological and clinical manifestations of Huntingtons disease in the longitudinal TRACK-HD )] TJ ET BT 26.250 157.944 Td /F1 9.8 Tf [(study: Cross sectional analysis of baseline data. Lancet, 8\(9\), 791801.)] TJ ET BT 26.250 138.539 Td /F1 9.8 Tf [(8.)] TJ ET BT 38.132 138.539 Td /F1 9.8 Tf [(Shoulson, I. & Fahn, S. \(1979\). Huntington disease: Clinical care and evaluation. Neurology, 29\(1\), 13.)] TJ ET BT 26.250 119.134 Td /F1 9.8 Tf [(9.)] TJ ET BT 38.132 119.134 Td /F1 9.8 Tf [(Ware, J., & Sherbourne, C. D. \(1992\). The MOS 36-item short-form health survey \(SF-36\). Medical Care, 30\(6\), 473483.)] TJ ET BT 26.250 99.729 Td /F1 9.8 Tf [(10.)] TJ ET BT 43.553 99.729 Td /F1 9.8 Tf [(Huntington Study Group \(1996\). Unified Huntingtons disease rating scale: Reliability and consistency. Movement Disorders )] TJ ET BT 26.250 87.825 Td /F1 9.8 Tf [(11\(2\), 136142.)] TJ ET BT 26.250 68.420 Td /F1 9.8 Tf [(11.)] TJ ET BT 43.553 68.420 Td /F1 9.8 Tf [(Beglinger, L. J., ORourke, J. J. F., Wang, C., Langbehn, D., Duff, K., Paulsen, J.S., and Huntington Study Group )] TJ ET BT 26.250 56.515 Td /F1 9.8 Tf [(Investigators. \(2010\). Earliest functional declines in Huntington disease. Psychiatry Research 178\(2\), 414418.)] TJ ET Q q 15.000 46.634 577.500 730.366 re W n 0.271 0.267 0.267 rg BT 26.250 767.476 Td /F4 9.8 Tf [(Psychiatric:)] TJ ET BT 81.523 767.476 Td /F1 9.8 Tf [( Eric A. Epping, MD, PhD \(Chair\), Nancy Downing, RN, PhD, Jess Fiedorowicz, MD, Robert Robinson, MD, Megan )] TJ ET BT 26.250 755.571 Td /F1 9.8 Tf [(Smith, PhD, Leigh Beglinger, PhD, James Mills, MS, Kristine Rees, BA, Adam Ruggle, Stacie Vik, BA, Janet Williams, PhD, )] TJ ET BT 26.250 743.667 Td /F1 9.8 Tf [(Dawei Liu, PhD, David Moser, PhD, and Kelly Rowe \(University of Iowa\); Karen Anderson, MD \(University of Maryland\); David )] TJ ET BT 26.250 731.762 Td /F1 9.8 Tf [(Craufurd, MD \(University of Manchester\); Mark Groves, MD \(Columbia University\); Anthony Vaccarino, PhD and Ken Evans, )] TJ ET BT 26.250 719.857 Td /F1 9.8 Tf [(PhD \(Ontario Cancer Biomarker Network\); Hugh Rickards, MD \(Queen Elizabeth Psychiatric Hospital\); Eric van Duijn, MD )] TJ ET BT 26.250 707.952 Td /F1 9.8 Tf [(\(Leiden University Medical Center, Netherlands\); Irina Antonijevic, MD, PhD, and Joseph Giuliano \(CHDI\); Phyllis Chua \(The )] TJ ET BT 26.250 696.048 Td /F1 9.8 Tf [(University of Melbourne, Royal Melbourne Hospital\); and Kimberly Quaid, PhD \(Indiana University School of Medicine\).)] TJ ET BT 26.250 676.643 Td /F4 9.8 Tf [(Core Sections)] TJ ET BT 26.250 657.238 Td /F4 9.8 Tf [(Statistics:)] TJ ET BT 72.845 657.238 Td /F1 9.8 Tf [( James Mills, MEd, MS, Dawei Liu, PhD, Jeffrey Long, PhD, Wenjing Lu, Kai Wang, PhD, and Ying Zhang, PhD )] TJ ET BT 26.250 645.333 Td /F1 9.8 Tf [(\(University of Iowa\).)] TJ ET BT 26.250 625.929 Td /F4 9.8 Tf [(Recruitment/Retention:)] TJ ET BT 134.046 625.929 Td /F1 9.8 Tf [( Martha Nance, MD \(Chair, University of Minnesota\); Anne Leserman, MSW, LISW, Nicholas Doucette, )] TJ ET BT 26.250 614.024 Td /F1 9.8 Tf [(BA, Mycah Kimble, BA, Patricia Ryan, MSW, LISW, MA, Kelli Thumma, BA, Elijah Waterman, BA, and Jeremy Hinkel, BA )] TJ ET BT 26.250 602.119 Td /F1 9.8 Tf [(\(University of Iowa\).)] TJ ET BT 26.250 582.714 Td /F4 9.8 Tf [(Ethics:)] TJ ET BT 58.757 582.714 Td /F1 9.8 Tf [( Cheryl Erwin, JD, PhD, \(Chair, McGovern Center for Health, Humanities and the Human Spirit\); Eric A. Epping, MD, )] TJ ET BT 26.250 570.810 Td /F1 9.8 Tf [(PhD Janet Williams, PhD, Nicholas Doucette, BA, Anne Leserman, MSW, LISW, James Mills, MS, Lynn Schaul, BA, and Stacie )] TJ ET BT 26.250 558.905 Td /F1 9.8 Tf [(Vik, BA \(University of Iowa\); Martha Nance, MD \(University of Minnesota\); and Lisa Hughes, MEd \(University of Texas Medical )] TJ ET BT 26.250 547.000 Td /F1 9.8 Tf [(School at Houston\).)] TJ ET BT 26.250 527.595 Td /F4 9.8 Tf [(IT/Management:)] TJ ET BT 100.467 527.595 Td /F1 9.8 Tf [( Hans Johnson, PhD \(Chair\), R.J. Connell, BS, Karen Pease, BS, Ben Rogers, BA, BSCS, Jim Smith, AS, )] TJ ET BT 26.250 515.691 Td /F1 9.8 Tf [(Shuhua Wu, MCS, Roland Zschiegner, Erin Carney, Bill McKirgan, Mark Scully, and Ryan Wyse \(University of Iowa\); Jeremy )] TJ ET BT 26.250 503.786 Td /F1 9.8 Tf [(Bockholt \(AMBIGroup\).)] TJ ET BT 26.250 484.381 Td /F4 9.8 Tf [(Program Management)] TJ ET BT 26.250 464.976 Td /F4 9.8 Tf [(Administrative:)] TJ ET BT 97.220 464.976 Td /F1 9.8 Tf [( Chris Werling-Witkoske \(Chair\), Karla Anderson, BS, Kristine Bjork, BA, Ann Dudler, Jamy Schumacher, Sean )] TJ ET BT 26.250 453.072 Td /F1 9.8 Tf [(Thompson, BA, Leann Davis, Machelle Henneberry, Greg Ennis, MA, and Stacie Vik, BA \(University of Iowa\).)] TJ ET BT 26.250 433.667 Td /F4 9.8 Tf [(Financial:)] TJ ET BT 71.763 433.667 Td /F1 9.8 Tf [( Steve Blanchard, MSHA, Kelsey Montross, BA, and Phil Danzer \(University of Iowa\).)] TJ ET BT 26.250 397.064 Td /F4 12.0 Tf [(References)] TJ ET BT 26.250 369.610 Td /F1 9.8 Tf [(1.)] TJ ET BT 38.132 369.610 Td /F1 9.8 Tf [(Roos, R. A. \(2010\). Huntingtons disease: A clinical review. Orphanet Journal of Rare Diseases, 5\(1\), 40.)] TJ ET BT 26.250 350.205 Td /F1 9.8 Tf [(2.)] TJ ET BT 38.132 350.205 Td /F1 9.8 Tf [(Paulsen, J. S., Wang, C., Duff, K., Barker, R., Nance, M., Beglinger, L., Moser, D., Williams, J. K., Simpson, S., Langbehn, )] TJ ET BT 26.250 338.301 Td /F1 9.8 Tf [(D., van Kammen, D. P., and the PREDICT-HD Investigators of the Huntington Study Group \(2010\). Challenges assessing )] TJ ET BT 26.250 326.396 Td /F1 9.8 Tf [(clinical endpoints in early Huntington disease. Movement Disorders 25\(15\), 25952603.)] TJ ET BT 26.250 306.991 Td /F1 9.8 Tf [(3.)] TJ ET BT 38.132 306.991 Td /F1 9.8 Tf [(CDC \(2011\). Health-related quality of life. Retrieved from https://www.cdc.gov/hrqol/concept.htm.)] TJ ET BT 26.250 287.586 Td /F1 9.8 Tf [(4.)] TJ ET BT 38.132 287.586 Td /F1 9.8 Tf [(Wilson, I. B. & Cleary, P. D. \(1995\). Linking clinical variables with health-related quality of life: A conceptual model of patient )] TJ ET BT 26.250 275.682 Td /F1 9.8 Tf [(outcomes. JAMA, 273\(1\), 5965.)] TJ ET BT 26.250 256.277 Td /F1 9.8 Tf [(5.)] TJ ET BT 38.132 256.277 Td /F1 9.8 Tf [(Ferrans, C.E., Zerwic, J.J., Wilbur, J.E.,& Larson, J.L. \(2005\). Conceptual model of health-related quality of life. Journal of )] TJ ET BT 26.250 244.372 Td /F1 9.8 Tf [(Nursing Scholarship 37\(4\), 336342.)] TJ ET BT 26.250 224.967 Td /F1 9.8 Tf [(6.)] TJ ET BT 38.132 224.967 Td /F1 9.8 Tf [(Paulsen, J. S., Zhao. H., Stout, J. C., Brinkman, R.R., Guttman, M., Ross, C. A., et al. \(2001\). Clinical markers of early )] TJ ET BT 26.250 213.063 Td /F1 9.8 Tf [(disease in persons near onset of Huntington's disease. Neurology, 57\(4\):658662.)] TJ ET BT 26.250 193.658 Td /F1 9.8 Tf [(7.)] TJ ET BT 38.132 193.658 Td /F1 9.8 Tf [(Tabrizi, S. J., Langbehn, D. R., Leavitt, B. R., Roos, R. A. C., Durr, A., Craufurd, D., Kennard, C., Hicks, S. L., Fox, N. D., )] TJ ET BT 26.250 181.753 Td /F1 9.8 Tf [(Scahill, R. I., Borowsky, B., Tobin, A. J., Rosas, H. D., Johnson, H., Reimann, R., Landwehrmeyere, B., Stout, J.C., and the )] TJ ET BT 26.250 169.848 Td /F1 9.8 Tf [(TRACK-HD Investigators \(2009\). Biological and clinical manifestations of Huntingtons disease in the longitudinal TRACK-HD )] TJ ET BT 26.250 157.944 Td /F1 9.8 Tf [(study: Cross sectional analysis of baseline data. Lancet, 8\(9\), 791801.)] TJ ET BT 26.250 138.539 Td /F1 9.8 Tf [(8.)] TJ ET BT 38.132 138.539 Td /F1 9.8 Tf [(Shoulson, I. & Fahn, S. \(1979\). Huntington disease: Clinical care and evaluation. Neurology, 29\(1\), 13.)] TJ ET BT 26.250 119.134 Td /F1 9.8 Tf [(9.)] TJ ET BT 38.132 119.134 Td /F1 9.8 Tf [(Ware, J., & Sherbourne, C. D. \(1992\). The MOS 36-item short-form health survey \(SF-36\). Medical Care, 30\(6\), 473483.)] TJ ET BT 26.250 99.729 Td /F1 9.8 Tf [(10.)] TJ ET BT 43.553 99.729 Td /F1 9.8 Tf [(Huntington Study Group \(1996\). Unified Huntingtons disease rating scale: Reliability and consistency. Movement Disorders )] TJ ET BT 26.250 87.825 Td /F1 9.8 Tf [(11\(2\), 136142.)] TJ ET BT 26.250 68.420 Td /F1 9.8 Tf [(11.)] TJ ET BT 43.553 68.420 Td /F1 9.8 Tf [(Beglinger, L. J., ORourke, J. J. F., Wang, C., Langbehn, D., Duff, K., Paulsen, J.S., and Huntington Study Group )] TJ ET BT 26.250 56.515 Td /F1 9.8 Tf [(Investigators. \(2010\). Earliest functional declines in Huntington disease. Psychiatry Research 178\(2\), 414418.)] TJ ET Q q 15.000 46.634 577.500 730.366 re W n 0.271 0.267 0.267 rg BT 26.250 767.476 Td /F4 9.8 Tf [(Psychiatric:)] TJ ET BT 81.523 767.476 Td /F1 9.8 Tf [( Eric A. Epping, MD, PhD \(Chair\), Nancy Downing, RN, PhD, Jess Fiedorowicz, MD, Robert Robinson, MD, Megan )] TJ ET BT 26.250 755.571 Td /F1 9.8 Tf [(Smith, PhD, Leigh Beglinger, PhD, James Mills, MS, Kristine Rees, BA, Adam Ruggle, Stacie Vik, BA, Janet Williams, PhD, )] TJ ET BT 26.250 743.667 Td /F1 9.8 Tf [(Dawei Liu, PhD, David Moser, PhD, and Kelly Rowe \(University of Iowa\); Karen Anderson, MD \(University of Maryland\); David )] TJ ET BT 26.250 731.762 Td /F1 9.8 Tf [(Craufurd, MD \(University of Manchester\); Mark Groves, MD \(Columbia University\); Anthony Vaccarino, PhD and Ken Evans, )] TJ ET BT 26.250 719.857 Td /F1 9.8 Tf [(PhD \(Ontario Cancer Biomarker Network\); Hugh Rickards, MD \(Queen Elizabeth Psychiatric Hospital\); Eric van Duijn, MD )] TJ ET BT 26.250 707.952 Td /F1 9.8 Tf [(\(Leiden University Medical Center, Netherlands\); Irina Antonijevic, MD, PhD, and Joseph Giuliano \(CHDI\); Phyllis Chua \(The )] TJ ET BT 26.250 696.048 Td /F1 9.8 Tf [(University of Melbourne, Royal Melbourne Hospital\); and Kimberly Quaid, PhD \(Indiana University School of Medicine\).)] TJ ET BT 26.250 676.643 Td /F4 9.8 Tf [(Core Sections)] TJ ET BT 26.250 657.238 Td /F4 9.8 Tf [(Statistics:)] TJ ET BT 72.845 657.238 Td /F1 9.8 Tf [( James Mills, MEd, MS, Dawei Liu, PhD, Jeffrey Long, PhD, Wenjing Lu, Kai Wang, PhD, and Ying Zhang, PhD )] TJ ET BT 26.250 645.333 Td /F1 9.8 Tf [(\(University of Iowa\).)] TJ ET BT 26.250 625.929 Td /F4 9.8 Tf [(Recruitment/Retention:)] TJ ET BT 134.046 625.929 Td /F1 9.8 Tf [( Martha Nance, MD \(Chair, University of Minnesota\); Anne Leserman, MSW, LISW, Nicholas Doucette, )] TJ ET BT 26.250 614.024 Td /F1 9.8 Tf [(BA, Mycah Kimble, BA, Patricia Ryan, MSW, LISW, MA, Kelli Thumma, BA, Elijah Waterman, BA, and Jeremy Hinkel, BA )] TJ ET BT 26.250 602.119 Td /F1 9.8 Tf [(\(University of Iowa\).)] TJ ET BT 26.250 582.714 Td /F4 9.8 Tf [(Ethics:)] TJ ET BT 58.757 582.714 Td /F1 9.8 Tf [( Cheryl Erwin, JD, PhD, \(Chair, McGovern Center for Health, Humanities and the Human Spirit\); Eric A. Epping, MD, )] TJ ET BT 26.250 570.810 Td /F1 9.8 Tf [(PhD Janet Williams, PhD, Nicholas Doucette, BA, Anne Leserman, MSW, LISW, James Mills, MS, Lynn Schaul, BA, and Stacie )] TJ ET BT 26.250 558.905 Td /F1 9.8 Tf [(Vik, BA \(University of Iowa\); Martha Nance, MD \(University of Minnesota\); and Lisa Hughes, MEd \(University of Texas Medical )] TJ ET BT 26.250 547.000 Td /F1 9.8 Tf [(School at Houston\).)] TJ ET BT 26.250 527.595 Td /F4 9.8 Tf [(IT/Management:)] TJ ET BT 100.467 527.595 Td /F1 9.8 Tf [( Hans Johnson, PhD \(Chair\), R.J. Connell, BS, Karen Pease, BS, Ben Rogers, BA, BSCS, Jim Smith, AS, )] TJ ET BT 26.250 515.691 Td /F1 9.8 Tf [(Shuhua Wu, MCS, Roland Zschiegner, Erin Carney, Bill McKirgan, Mark Scully, and Ryan Wyse \(University of Iowa\); Jeremy )] TJ ET BT 26.250 503.786 Td /F1 9.8 Tf [(Bockholt \(AMBIGroup\).)] TJ ET BT 26.250 484.381 Td /F4 9.8 Tf [(Program Management)] TJ ET BT 26.250 464.976 Td /F4 9.8 Tf [(Administrative:)] TJ ET BT 97.220 464.976 Td /F1 9.8 Tf [( Chris Werling-Witkoske \(Chair\), Karla Anderson, BS, Kristine Bjork, BA, Ann Dudler, Jamy Schumacher, Sean )] TJ ET BT 26.250 453.072 Td /F1 9.8 Tf [(Thompson, BA, Leann Davis, Machelle Henneberry, Greg Ennis, MA, and Stacie Vik, BA \(University of Iowa\).)] TJ ET BT 26.250 433.667 Td /F4 9.8 Tf [(Financial:)] TJ ET BT 71.763 433.667 Td /F1 9.8 Tf [( Steve Blanchard, MSHA, Kelsey Montross, BA, and Phil Danzer \(University of Iowa\).)] TJ ET BT 26.250 397.064 Td /F4 12.0 Tf [(References)] TJ ET BT 26.250 369.610 Td /F1 9.8 Tf [(1.)] TJ ET BT 38.132 369.610 Td /F1 9.8 Tf [(Roos, R. A. \(2010\). Huntingtons disease: A clinical review. Orphanet Journal of Rare Diseases, 5\(1\), 40.)] TJ ET BT 26.250 350.205 Td /F1 9.8 Tf [(2.)] TJ ET BT 38.132 350.205 Td /F1 9.8 Tf [(Paulsen, J. S., Wang, C., Duff, K., Barker, R., Nance, M., Beglinger, L., Moser, D., Williams, J. K., Simpson, S., Langbehn, )] TJ ET BT 26.250 338.301 Td /F1 9.8 Tf [(D., van Kammen, D. P., and the PREDICT-HD Investigators of the Huntington Study Group \(2010\). Challenges assessing )] TJ ET BT 26.250 326.396 Td /F1 9.8 Tf [(clinical endpoints in early Huntington disease. Movement Disorders 25\(15\), 25952603.)] TJ ET BT 26.250 306.991 Td /F1 9.8 Tf [(3.)] TJ ET BT 38.132 306.991 Td /F1 9.8 Tf [(CDC \(2011\). Health-related quality of life. Retrieved from https://www.cdc.gov/hrqol/concept.htm.)] TJ ET BT 26.250 287.586 Td /F1 9.8 Tf [(4.)] TJ ET BT 38.132 287.586 Td /F1 9.8 Tf [(Wilson, I. B. & Cleary, P. D. \(1995\). Linking clinical variables with health-related quality of life: A conceptual model of patient )] TJ ET BT 26.250 275.682 Td /F1 9.8 Tf [(outcomes. JAMA, 273\(1\), 5965.)] TJ ET BT 26.250 256.277 Td /F1 9.8 Tf [(5.)] TJ ET BT 38.132 256.277 Td /F1 9.8 Tf [(Ferrans, C.E., Zerwic, J.J., Wilbur, J.E.,& Larson, J.L. \(2005\). Conceptual model of health-related quality of life. Journal of )] TJ ET BT 26.250 244.372 Td /F1 9.8 Tf [(Nursing Scholarship 37\(4\), 336342.)] TJ ET BT 26.250 224.967 Td /F1 9.8 Tf [(6.)] TJ ET BT 38.132 224.967 Td /F1 9.8 Tf [(Paulsen, J. S., Zhao. H., Stout, J. C., Brinkman, R.R., Guttman, M., Ross, C. A., et al. \(2001\). Clinical markers of early )] TJ ET BT 26.250 213.063 Td /F1 9.8 Tf [(disease in persons near onset of Huntington's disease. Neurology, 57\(4\):658662.)] TJ ET BT 26.250 193.658 Td /F1 9.8 Tf [(7.)] TJ ET BT 38.132 193.658 Td /F1 9.8 Tf [(Tabrizi, S. J., Langbehn, D. R., Leavitt, B. R., Roos, R. A. C., Durr, A., Craufurd, D., Kennard, C., Hicks, S. L., Fox, N. D., )] TJ ET BT 26.250 181.753 Td /F1 9.8 Tf [(Scahill, R. I., Borowsky, B., Tobin, A. J., Rosas, H. D., Johnson, H., Reimann, R., Landwehrmeyere, B., Stout, J.C., and the )] TJ ET BT 26.250 169.848 Td /F1 9.8 Tf [(TRACK-HD Investigators \(2009\). Biological and clinical manifestations of Huntingtons disease in the longitudinal TRACK-HD )] TJ ET BT 26.250 157.944 Td /F1 9.8 Tf [(study: Cross sectional analysis of baseline data. Lancet, 8\(9\), 791801.)] TJ ET BT 26.250 138.539 Td /F1 9.8 Tf [(8.)] TJ ET BT 38.132 138.539 Td /F1 9.8 Tf [(Shoulson, I. & Fahn, S. \(1979\). Huntington disease: Clinical care and evaluation. Neurology, 29\(1\), 13.)] TJ ET BT 26.250 119.134 Td /F1 9.8 Tf [(9.)] TJ ET BT 38.132 119.134 Td /F1 9.8 Tf [(Ware, J., & Sherbourne, C. D. \(1992\). The MOS 36-item short-form health survey \(SF-36\). Medical Care, 30\(6\), 473483.)] TJ ET BT 26.250 99.729 Td /F1 9.8 Tf [(10.)] TJ ET BT 43.553 99.729 Td /F1 9.8 Tf [(Huntington Study Group \(1996\). Unified Huntingtons disease rating scale: Reliability and consistency. Movement Disorders )] TJ ET BT 26.250 87.825 Td /F1 9.8 Tf [(11\(2\), 136142.)] TJ ET BT 26.250 68.420 Td /F1 9.8 Tf [(11.)] TJ ET BT 43.553 68.420 Td /F1 9.8 Tf [(Beglinger, L. J., ORourke, J. J. F., Wang, C., Langbehn, D., Duff, K., Paulsen, J.S., and Huntington Study Group )] TJ ET BT 26.250 56.515 Td /F1 9.8 Tf [(Investigators. \(2010\). Earliest functional declines in Huntington disease. Psychiatry Research 178\(2\), 414418.)] 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 Huntington Disease)] TJ ET Q endstream endobj 243 0 obj << /Type /Page /Parent 3 0 R /Contents 244 0 R >> endobj 244 0 obj << /Length 15640 >> stream 0.271 0.267 0.267 rg q 15.000 291.048 577.500 485.952 re W n 0.271 0.267 0.267 rg BT 26.250 759.976 Td /F1 9.8 Tf [(12.)] TJ ET BT 43.553 759.976 Td /F1 9.8 Tf [(Nowinski, C. J., Victorson, D., Cavazos, J. E., Gershon, R., & Cella, D. \(2010\). Neuro-QOL and the NIH Toolbox: )] TJ ET BT 26.250 748.071 Td /F1 9.8 Tf [(Implications for epilepsy. Therapy, 7\(5\), 533540.)] TJ ET BT 26.250 728.667 Td /F1 9.8 Tf [(13.)] TJ ET BT 43.553 728.667 Td /F1 9.8 Tf [(FDA \(2009\). Guidance for Industry, Patient-Reported Outcome Measures: Use in Medical Product Development to Support )] TJ ET BT 26.250 716.762 Td /F1 9.8 Tf [(Labeling Claim. Rockville, MD.)] TJ ET BT 26.250 697.357 Td /F1 9.8 Tf [(14.)] TJ ET BT 43.553 697.357 Td /F1 9.8 Tf [(Wackerbarth, S. B., Streams, M. E., & Smith, M. K. \(2002\). Capturing the insights of family caregivers: Survey item )] TJ ET BT 26.250 685.452 Td /F1 9.8 Tf [(generation from a coupled interview/focus group process. Qualitative Health Research 12\(8\), 11411154.)] TJ ET BT 26.250 666.048 Td /F1 9.8 Tf [(15.)] TJ ET BT 43.553 666.048 Td /F1 9.8 Tf [(Langbehn, D. R., Brinkman, R. R., Falush, D., Paulsen, J. S., Hayden, M. R., and the International Huntingtons Disease )] TJ ET BT 26.250 654.143 Td /F1 9.8 Tf [(Collaborative Group. \(2004\). A new model for prediction of the age of onset and penetrance for Huntintons disease based on )] TJ ET BT 26.250 642.238 Td /F1 9.8 Tf [(CAG length. Clinical Genetics, 65\(4\), 267277.)] TJ ET BT 26.250 622.833 Td /F1 9.8 Tf [(16.)] TJ ET BT 43.553 622.833 Td /F1 9.8 Tf [(Sandelowski, M. \(2000\). Focus on research methods. Whatever happened to qualitative description? Research in Nursing )] TJ ET BT 26.250 610.929 Td /F1 9.8 Tf [(Health, 23\(4\), 334340.)] TJ ET BT 26.250 591.524 Td /F1 9.8 Tf [(17.)] TJ ET BT 43.553 591.524 Td /F1 9.8 Tf [(QSR International. \(2007\). NVivo. Victoria: Doncaster.)] TJ ET BT 26.250 572.119 Td /F1 9.8 Tf [(18.)] TJ ET BT 43.553 572.119 Td /F1 9.8 Tf [(Tabrizi, S.J., Scahill, R.I., Durr, A., Roos,R.A.C., Leavitt, B., Jones, R. Landwehrmeyer, G.B., Fox, N.C., Johnson, H., Hicks, )] TJ ET BT 26.250 560.214 Td /F1 9.8 Tf [(S.I., Kennard, C., Craufurd, D., Frost, C., Langbehn, D., Reilmann, R., Stout, J.C., and the TRACK-HD Investigators. \(2011\). )] TJ ET BT 26.250 548.310 Td /F1 9.8 Tf [(Biological and clinical changes in premanifest and early stage Huntingtons disease in the TRACK-HD study: The 12-month )] TJ ET BT 26.250 536.405 Td /F1 9.8 Tf [(longitudinal analysis. Lancet, 10\(1\), 3142.)] TJ ET BT 26.250 517.000 Td /F1 9.8 Tf [(19.)] TJ ET BT 43.553 517.000 Td /F1 9.8 Tf [(Hoth, K. F., Paulsen, J. S., Moser, D. J., Tranel, D., Clark, L. A., & Bechara, A. \(2007\). Patients with Huntingtons disease )] TJ ET BT 26.250 505.095 Td /F1 9.8 Tf [(have impaired awareness of cognitive, emotional, and functional abilities. Journal of Clinical and Experimental )] TJ ET BT 26.250 493.191 Td /F1 9.8 Tf [(Neuropsychology, 29\(4\), 365376.)] TJ ET BT 26.250 473.786 Td /F1 9.8 Tf [(20.)] TJ ET BT 43.553 473.786 Td /F1 9.8 Tf [(Duff K, Paulsen JS, Beglinger LJ, Langbehn DR, Wang C, Stout JC, Ross CA, Aylward E, Carlozzi NE, Queller S, Predict-)] TJ ET BT 26.250 461.881 Td /F1 9.8 Tf [(HD Investigators of the Huntington Study Group. \(2010\). "Frontal" behaviors before the diagnosis of Huntington's disease and )] TJ ET BT 26.250 449.976 Td /F1 9.8 Tf [(their relationship to markers of disease progression: evidence of early lack of awareness. J Neuropsychiatry Clin Neurosci, )] TJ ET BT 26.250 438.072 Td /F1 9.8 Tf [(22\(2\), 196207.)] TJ ET BT 26.250 418.667 Td /F1 9.8 Tf [(21.)] TJ ET BT 43.553 418.667 Td /F1 9.8 Tf [(Luck, T., Riedel-Heller, S. G., Luppa, M., Wiese, B., Wollny, A., Wagner, M., Bickel, H., Weyerer, S., Pentzek, M., Haller, F., )] TJ ET BT 26.250 406.762 Td /F1 9.8 Tf [(Moesch, E., Werle, J., Eisele, M., Maier, W., van den Bussche, H., Kaduszkiewicz, H., and the AgeCoDe Study Group \(2010\). )] TJ ET BT 26.250 394.857 Td /F1 9.8 Tf [(Risk factors for incident mild cognitive impairment. Acta Psychiatrica Scandinavica, 121\(4\), 260272.)] TJ ET BT 26.250 375.453 Td /F1 9.8 Tf [(22.)] TJ ET BT 43.553 375.453 Td /F1 9.8 Tf [(Petersen, R. C., Roberts, R. O., Knopman, D. S., Boeve, B. F., Geda, Y.E., Ivnik, R. J., Smith, G. E., & Jack, C. R. \(2009\). )] TJ ET BT 26.250 363.548 Td /F1 9.8 Tf [(Mild cognitive impairment: Ten years later. Archives of Neurology, 66\(12\), 14471455.)] TJ ET BT 26.250 344.143 Td /F1 9.8 Tf [(23.)] TJ ET BT 43.553 344.143 Td /F1 9.8 Tf [(Duff K, Paulsen JS, Beglinger LJ, Langbehn DR, Wang C, Stout JC, Ross CA, Aylward E, Carlozzi NE, Queller S; Predict-)] TJ ET BT 26.250 332.238 Td /F1 9.8 Tf [(HD Investigators of the Huntington Study Group. "Frontal" behaviors before the diagnosis of Huntington's disease and their )] TJ ET BT 26.250 320.334 Td /F1 9.8 Tf [(relationship to markers of disease progression: evidence of early lack of awareness. J Neuropsychiatry Clin Neurosci. 2010 )] TJ ET BT 26.250 308.429 Td /F1 9.8 Tf [(Spring;22\(2\):196-207. PubMed PMID: 20463114; PubMed Central PMCID: PMC2871328.)] TJ ET Q q 15.000 291.048 577.500 485.952 re W n 0.271 0.267 0.267 rg BT 26.250 759.976 Td /F1 9.8 Tf [(12.)] TJ ET BT 43.553 759.976 Td /F1 9.8 Tf [(Nowinski, C. J., Victorson, D., Cavazos, J. E., Gershon, R., & Cella, D. \(2010\). Neuro-QOL and the NIH Toolbox: )] TJ ET BT 26.250 748.071 Td /F1 9.8 Tf [(Implications for epilepsy. Therapy, 7\(5\), 533540.)] TJ ET BT 26.250 728.667 Td /F1 9.8 Tf [(13.)] TJ ET BT 43.553 728.667 Td /F1 9.8 Tf [(FDA \(2009\). Guidance for Industry, Patient-Reported Outcome Measures: Use in Medical Product Development to Support )] TJ ET BT 26.250 716.762 Td /F1 9.8 Tf [(Labeling Claim. Rockville, MD.)] TJ ET BT 26.250 697.357 Td /F1 9.8 Tf [(14.)] TJ ET BT 43.553 697.357 Td /F1 9.8 Tf [(Wackerbarth, S. B., Streams, M. E., & Smith, M. K. \(2002\). Capturing the insights of family caregivers: Survey item )] TJ ET BT 26.250 685.452 Td /F1 9.8 Tf [(generation from a coupled interview/focus group process. Qualitative Health Research 12\(8\), 11411154.)] TJ ET BT 26.250 666.048 Td /F1 9.8 Tf [(15.)] TJ ET BT 43.553 666.048 Td /F1 9.8 Tf [(Langbehn, D. R., Brinkman, R. R., Falush, D., Paulsen, J. S., Hayden, M. R., and the International Huntingtons Disease )] TJ ET BT 26.250 654.143 Td /F1 9.8 Tf [(Collaborative Group. \(2004\). A new model for prediction of the age of onset and penetrance for Huntintons disease based on )] TJ ET BT 26.250 642.238 Td /F1 9.8 Tf [(CAG length. Clinical Genetics, 65\(4\), 267277.)] TJ ET BT 26.250 622.833 Td /F1 9.8 Tf [(16.)] TJ ET BT 43.553 622.833 Td /F1 9.8 Tf [(Sandelowski, M. \(2000\). Focus on research methods. Whatever happened to qualitative description? Research in Nursing )] TJ ET BT 26.250 610.929 Td /F1 9.8 Tf [(Health, 23\(4\), 334340.)] TJ ET BT 26.250 591.524 Td /F1 9.8 Tf [(17.)] TJ ET BT 43.553 591.524 Td /F1 9.8 Tf [(QSR International. \(2007\). NVivo. Victoria: Doncaster.)] TJ ET BT 26.250 572.119 Td /F1 9.8 Tf [(18.)] TJ ET BT 43.553 572.119 Td /F1 9.8 Tf [(Tabrizi, S.J., Scahill, R.I., Durr, A., Roos,R.A.C., Leavitt, B., Jones, R. Landwehrmeyer, G.B., Fox, N.C., Johnson, H., Hicks, )] TJ ET BT 26.250 560.214 Td /F1 9.8 Tf [(S.I., Kennard, C., Craufurd, D., Frost, C., Langbehn, D., Reilmann, R., Stout, J.C., and the TRACK-HD Investigators. \(2011\). )] TJ ET BT 26.250 548.310 Td /F1 9.8 Tf [(Biological and clinical changes in premanifest and early stage Huntingtons disease in the TRACK-HD study: The 12-month )] TJ ET BT 26.250 536.405 Td /F1 9.8 Tf [(longitudinal analysis. Lancet, 10\(1\), 3142.)] TJ ET BT 26.250 517.000 Td /F1 9.8 Tf [(19.)] TJ ET BT 43.553 517.000 Td /F1 9.8 Tf [(Hoth, K. F., Paulsen, J. S., Moser, D. J., Tranel, D., Clark, L. A., & Bechara, A. \(2007\). Patients with Huntingtons disease )] TJ ET BT 26.250 505.095 Td /F1 9.8 Tf [(have impaired awareness of cognitive, emotional, and functional abilities. Journal of Clinical and Experimental )] TJ ET BT 26.250 493.191 Td /F1 9.8 Tf [(Neuropsychology, 29\(4\), 365376.)] TJ ET BT 26.250 473.786 Td /F1 9.8 Tf [(20.)] TJ ET BT 43.553 473.786 Td /F1 9.8 Tf [(Duff K, Paulsen JS, Beglinger LJ, Langbehn DR, Wang C, Stout JC, Ross CA, Aylward E, Carlozzi NE, Queller S, Predict-)] TJ ET BT 26.250 461.881 Td /F1 9.8 Tf [(HD Investigators of the Huntington Study Group. \(2010\). "Frontal" behaviors before the diagnosis of Huntington's disease and )] TJ ET BT 26.250 449.976 Td /F1 9.8 Tf [(their relationship to markers of disease progression: evidence of early lack of awareness. J Neuropsychiatry Clin Neurosci, )] TJ ET BT 26.250 438.072 Td /F1 9.8 Tf [(22\(2\), 196207.)] TJ ET BT 26.250 418.667 Td /F1 9.8 Tf [(21.)] TJ ET BT 43.553 418.667 Td /F1 9.8 Tf [(Luck, T., Riedel-Heller, S. G., Luppa, M., Wiese, B., Wollny, A., Wagner, M., Bickel, H., Weyerer, S., Pentzek, M., Haller, F., )] TJ ET BT 26.250 406.762 Td /F1 9.8 Tf [(Moesch, E., Werle, J., Eisele, M., Maier, W., van den Bussche, H., Kaduszkiewicz, H., and the AgeCoDe Study Group \(2010\). )] TJ ET BT 26.250 394.857 Td /F1 9.8 Tf [(Risk factors for incident mild cognitive impairment. Acta Psychiatrica Scandinavica, 121\(4\), 260272.)] TJ ET BT 26.250 375.453 Td /F1 9.8 Tf [(22.)] TJ ET BT 43.553 375.453 Td /F1 9.8 Tf [(Petersen, R. C., Roberts, R. O., Knopman, D. S., Boeve, B. F., Geda, Y.E., Ivnik, R. J., Smith, G. E., & Jack, C. R. \(2009\). )] TJ ET BT 26.250 363.548 Td /F1 9.8 Tf [(Mild cognitive impairment: Ten years later. Archives of Neurology, 66\(12\), 14471455.)] TJ ET BT 26.250 344.143 Td /F1 9.8 Tf [(23.)] TJ ET BT 43.553 344.143 Td /F1 9.8 Tf [(Duff K, Paulsen JS, Beglinger LJ, Langbehn DR, Wang C, Stout JC, Ross CA, Aylward E, Carlozzi NE, Queller S; Predict-)] TJ ET BT 26.250 332.238 Td /F1 9.8 Tf [(HD Investigators of the Huntington Study Group. "Frontal" behaviors before the diagnosis of Huntington's disease and their )] TJ ET BT 26.250 320.334 Td /F1 9.8 Tf [(relationship to markers of disease progression: evidence of early lack of awareness. J Neuropsychiatry Clin Neurosci. 2010 )] TJ ET BT 26.250 308.429 Td /F1 9.8 Tf [(Spring;22\(2\):196-207. PubMed PMID: 20463114; PubMed Central PMCID: PMC2871328.)] TJ ET Q q 15.000 291.048 577.500 485.952 re W n 0.271 0.267 0.267 rg BT 26.250 759.976 Td /F1 9.8 Tf [(12.)] TJ ET BT 43.553 759.976 Td /F1 9.8 Tf [(Nowinski, C. J., Victorson, D., Cavazos, J. E., Gershon, R., & Cella, D. \(2010\). Neuro-QOL and the NIH Toolbox: )] TJ ET BT 26.250 748.071 Td /F1 9.8 Tf [(Implications for epilepsy. Therapy, 7\(5\), 533540.)] TJ ET BT 26.250 728.667 Td /F1 9.8 Tf [(13.)] TJ ET BT 43.553 728.667 Td /F1 9.8 Tf [(FDA \(2009\). Guidance for Industry, Patient-Reported Outcome Measures: Use in Medical Product Development to Support )] TJ ET BT 26.250 716.762 Td /F1 9.8 Tf [(Labeling Claim. Rockville, MD.)] TJ ET BT 26.250 697.357 Td /F1 9.8 Tf [(14.)] TJ ET BT 43.553 697.357 Td /F1 9.8 Tf [(Wackerbarth, S. B., Streams, M. E., & Smith, M. K. \(2002\). Capturing the insights of family caregivers: Survey item )] TJ ET BT 26.250 685.452 Td /F1 9.8 Tf [(generation from a coupled interview/focus group process. Qualitative Health Research 12\(8\), 11411154.)] TJ ET BT 26.250 666.048 Td /F1 9.8 Tf [(15.)] TJ ET BT 43.553 666.048 Td /F1 9.8 Tf [(Langbehn, D. R., Brinkman, R. R., Falush, D., Paulsen, J. S., Hayden, M. R., and the International Huntingtons Disease )] TJ ET BT 26.250 654.143 Td /F1 9.8 Tf [(Collaborative Group. \(2004\). A new model for prediction of the age of onset and penetrance for Huntintons disease based on )] TJ ET BT 26.250 642.238 Td /F1 9.8 Tf [(CAG length. Clinical Genetics, 65\(4\), 267277.)] TJ ET BT 26.250 622.833 Td /F1 9.8 Tf [(16.)] TJ ET BT 43.553 622.833 Td /F1 9.8 Tf [(Sandelowski, M. \(2000\). Focus on research methods. Whatever happened to qualitative description? Research in Nursing )] TJ ET BT 26.250 610.929 Td /F1 9.8 Tf [(Health, 23\(4\), 334340.)] TJ ET BT 26.250 591.524 Td /F1 9.8 Tf [(17.)] TJ ET BT 43.553 591.524 Td /F1 9.8 Tf [(QSR International. \(2007\). NVivo. Victoria: Doncaster.)] TJ ET BT 26.250 572.119 Td /F1 9.8 Tf [(18.)] TJ ET BT 43.553 572.119 Td /F1 9.8 Tf [(Tabrizi, S.J., Scahill, R.I., Durr, A., Roos,R.A.C., Leavitt, B., Jones, R. Landwehrmeyer, G.B., Fox, N.C., Johnson, H., Hicks, )] TJ ET BT 26.250 560.214 Td /F1 9.8 Tf [(S.I., Kennard, C., Craufurd, D., Frost, C., Langbehn, D., Reilmann, R., Stout, J.C., and the TRACK-HD Investigators. \(2011\). )] TJ ET BT 26.250 548.310 Td /F1 9.8 Tf [(Biological and clinical changes in premanifest and early stage Huntingtons disease in the TRACK-HD study: The 12-month )] TJ ET BT 26.250 536.405 Td /F1 9.8 Tf [(longitudinal analysis. Lancet, 10\(1\), 3142.)] TJ ET BT 26.250 517.000 Td /F1 9.8 Tf [(19.)] TJ ET BT 43.553 517.000 Td /F1 9.8 Tf [(Hoth, K. F., Paulsen, J. S., Moser, D. J., Tranel, D., Clark, L. A., & Bechara, A. \(2007\). Patients with Huntingtons disease )] TJ ET BT 26.250 505.095 Td /F1 9.8 Tf [(have impaired awareness of cognitive, emotional, and functional abilities. Journal of Clinical and Experimental )] TJ ET BT 26.250 493.191 Td /F1 9.8 Tf [(Neuropsychology, 29\(4\), 365376.)] TJ ET BT 26.250 473.786 Td /F1 9.8 Tf [(20.)] TJ ET BT 43.553 473.786 Td /F1 9.8 Tf [(Duff K, Paulsen JS, Beglinger LJ, Langbehn DR, Wang C, Stout JC, Ross CA, Aylward E, Carlozzi NE, Queller S, Predict-)] TJ ET BT 26.250 461.881 Td /F1 9.8 Tf [(HD Investigators of the Huntington Study Group. \(2010\). "Frontal" behaviors before the diagnosis of Huntington's disease and )] TJ ET BT 26.250 449.976 Td /F1 9.8 Tf [(their relationship to markers of disease progression: evidence of early lack of awareness. J Neuropsychiatry Clin Neurosci, )] TJ ET BT 26.250 438.072 Td /F1 9.8 Tf [(22\(2\), 196207.)] TJ ET BT 26.250 418.667 Td /F1 9.8 Tf [(21.)] TJ ET BT 43.553 418.667 Td /F1 9.8 Tf [(Luck, T., Riedel-Heller, S. G., Luppa, M., Wiese, B., Wollny, A., Wagner, M., Bickel, H., Weyerer, S., Pentzek, M., Haller, F., )] TJ ET BT 26.250 406.762 Td /F1 9.8 Tf [(Moesch, E., Werle, J., Eisele, M., Maier, W., van den Bussche, H., Kaduszkiewicz, H., and the AgeCoDe Study Group \(2010\). )] TJ ET BT 26.250 394.857 Td /F1 9.8 Tf [(Risk factors for incident mild cognitive impairment. Acta Psychiatrica Scandinavica, 121\(4\), 260272.)] TJ ET BT 26.250 375.453 Td /F1 9.8 Tf [(22.)] TJ ET BT 43.553 375.453 Td /F1 9.8 Tf [(Petersen, R. C., Roberts, R. O., Knopman, D. S., Boeve, B. F., Geda, Y.E., Ivnik, R. J., Smith, G. E., & Jack, C. R. \(2009\). )] TJ ET BT 26.250 363.548 Td /F1 9.8 Tf [(Mild cognitive impairment: Ten years later. Archives of Neurology, 66\(12\), 14471455.)] TJ ET BT 26.250 344.143 Td /F1 9.8 Tf [(23.)] TJ ET BT 43.553 344.143 Td /F1 9.8 Tf [(Duff K, Paulsen JS, Beglinger LJ, Langbehn DR, Wang C, Stout JC, Ross CA, Aylward E, Carlozzi NE, Queller S; Predict-)] TJ ET BT 26.250 332.238 Td /F1 9.8 Tf [(HD Investigators of the Huntington Study Group. "Frontal" behaviors before the diagnosis of Huntington's disease and their )] TJ ET BT 26.250 320.334 Td /F1 9.8 Tf [(relationship to markers of disease progression: evidence of early lack of awareness. J Neuropsychiatry Clin Neurosci. 2010 )] TJ ET BT 26.250 308.429 Td /F1 9.8 Tf [(Spring;22\(2\):196-207. PubMed PMID: 20463114; PubMed Central PMCID: PMC2871328.)] 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 Huntington Disease)] TJ ET Q endstream endobj xref 0 245 0000000000 65535 f 0000000008 00000 n 0000000073 00000 n 0000000119 00000 n 0000000411 00000 n 0000000448 00000 n 0000000698 00000 n 0000001330 00000 n 0000033131 00000 n 0000033238 00000 n 0000033346 00000 n 0000033457 00000 n 0000033570 00000 n 0000033958 00000 n 0000038439 00000 n 0000038566 00000 n 0000038746 00000 n 0000038873 00000 n 0000039053 00000 n 0000039180 00000 n 0000039290 00000 n 0000039416 00000 n 0000039517 00000 n 0000039644 00000 n 0000039744 00000 n 0000039872 00000 n 0000039977 00000 n 0000040105 00000 n 0000040204 00000 n 0000040332 00000 n 0000040432 00000 n 0000040560 00000 n 0000040596 00000 n 0000040722 00000 n 0000040758 00000 n 0000040886 00000 n 0000040922 00000 n 0000041050 00000 n 0000041086 00000 n 0000041214 00000 n 0000041250 00000 n 0000041378 00000 n 0000041414 00000 n 0000041542 00000 n 0000041578 00000 n 0000041705 00000 n 0000041741 00000 n 0000041869 00000 n 0000041905 00000 n 0000042033 00000 n 0000042069 00000 n 0000042197 00000 n 0000042233 00000 n 0000042361 00000 n 0000042397 00000 n 0000042525 00000 n 0000042561 00000 n 0000042689 00000 n 0000042725 00000 n 0000042853 00000 n 0000042889 00000 n 0000043017 00000 n 0000043053 00000 n 0000043177 00000 n 0000043213 00000 n 0000043340 00000 n 0000043520 00000 n 0000043647 00000 n 0000043827 00000 n 0000043954 00000 n 0000044064 00000 n 0000044190 00000 n 0000044291 00000 n 0000044418 00000 n 0000044518 00000 n 0000044646 00000 n 0000044751 00000 n 0000044879 00000 n 0000044978 00000 n 0000045106 00000 n 0000045206 00000 n 0000045334 00000 n 0000045370 00000 n 0000045496 00000 n 0000045532 00000 n 0000045660 00000 n 0000045696 00000 n 0000045824 00000 n 0000045860 00000 n 0000045988 00000 n 0000046024 00000 n 0000046152 00000 n 0000046188 00000 n 0000046316 00000 n 0000046352 00000 n 0000046479 00000 n 0000046515 00000 n 0000046643 00000 n 0000046679 00000 n 0000046807 00000 n 0000046843 00000 n 0000046973 00000 n 0000047010 00000 n 0000047140 00000 n 0000047177 00000 n 0000047307 00000 n 0000047344 00000 n 0000047474 00000 n 0000047511 00000 n 0000047641 00000 n 0000047678 00000 n 0000047808 00000 n 0000047845 00000 n 0000047971 00000 n 0000048008 00000 n 0000048137 00000 n 0000048318 00000 n 0000048447 00000 n 0000048628 00000 n 0000048757 00000 n 0000048868 00000 n 0000048996 00000 n 0000049098 00000 n 0000049227 00000 n 0000049328 00000 n 0000049458 00000 n 0000049564 00000 n 0000049694 00000 n 0000049794 00000 n 0000049924 00000 n 0000050025 00000 n 0000050155 00000 n 0000050192 00000 n 0000050320 00000 n 0000050357 00000 n 0000050487 00000 n 0000050524 00000 n 0000050654 00000 n 0000050691 00000 n 0000050821 00000 n 0000050858 00000 n 0000050988 00000 n 0000051025 00000 n 0000051155 00000 n 0000051192 00000 n 0000051321 00000 n 0000051358 00000 n 0000051488 00000 n 0000051525 00000 n 0000051655 00000 n 0000051692 00000 n 0000051822 00000 n 0000051859 00000 n 0000051989 00000 n 0000052026 00000 n 0000052156 00000 n 0000052193 00000 n 0000052323 00000 n 0000052360 00000 n 0000052490 00000 n 0000052527 00000 n 0000052657 00000 n 0000052694 00000 n 0000052820 00000 n 0000052857 00000 n 0000053032 00000 n 0000077922 00000 n 0000078039 00000 n 0000078169 00000 n 0000078206 00000 n 0000078336 00000 n 0000078373 00000 n 0000078502 00000 n 0000078539 00000 n 0000078669 00000 n 0000078706 00000 n 0000078836 00000 n 0000078873 00000 n 0000079003 00000 n 0000079040 00000 n 0000079169 00000 n 0000079206 00000 n 0000079336 00000 n 0000079373 00000 n 0000079503 00000 n 0000079540 00000 n 0000079670 00000 n 0000079707 00000 n 0000079836 00000 n 0000079873 00000 n 0000080003 00000 n 0000080040 00000 n 0000080167 00000 n 0000111027 00000 n 0000111157 00000 n 0000111194 00000 n 0000111324 00000 n 0000111361 00000 n 0000111491 00000 n 0000111528 00000 n 0000111658 00000 n 0000111695 00000 n 0000111825 00000 n 0000111862 00000 n 0000111992 00000 n 0000112029 00000 n 0000112228 00000 n 0000139668 00000 n 0000139798 00000 n 0000139835 00000 n 0000139965 00000 n 0000140002 00000 n 0000140132 00000 n 0000140169 00000 n 0000140299 00000 n 0000140336 00000 n 0000140464 00000 n 0000140501 00000 n 0000140631 00000 n 0000140668 00000 n 0000140798 00000 n 0000140835 00000 n 0000140965 00000 n 0000141002 00000 n 0000141132 00000 n 0000141169 00000 n 0000141297 00000 n 0000141334 00000 n 0000141464 00000 n 0000141501 00000 n 0000141631 00000 n 0000141668 00000 n 0000141798 00000 n 0000141835 00000 n 0000141965 00000 n 0000142002 00000 n 0000142130 00000 n 0000142167 00000 n 0000142234 00000 n 0000165552 00000 n 0000165619 00000 n 0000190827 00000 n 0000190894 00000 n 0000213009 00000 n 0000213076 00000 n trailer << /Size 245 /Root 1 0 R /Info 5 0 R >> startxref 228771 %%EOF