{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,19]],"date-time":"2026-09-19T08:31:25Z","timestamp":1789806685592,"version":"4.0.1"},"reference-count":26,"publisher":"Wiley","issue":"2","license":[{"start":{"date-parts":[[2016,6,22]],"date-time":"2016-06-22T00:00:00Z","timestamp":1466553600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"DOI":"10.13039\/100005725","name":"CHDI Foundation","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100005725","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["movementdisorders.onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Movement Disord Clin Pract"],"published-print":{"date-parts":[[2017,3]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>\n                      The study of complex neurodegenerative diseases is moving away from hypothesis\u2010driven biological methods toward large scale multimodal approaches, requiring standardized collaborative efforts. Enroll\u2010\n                      <jats:styled-content style=\"fixed-case\">HD<\/jats:styled-content>\n                      exemplifies such an integrated clinical research platform, designed and implemented to meet the research and clinical needs of Huntington's disease (\n                      <jats:styled-content style=\"fixed-case\">HD<\/jats:styled-content>\n                      ). The aim of this study was to describe the unique organization of Enroll\u2010\n                      <jats:styled-content style=\"fixed-case\">HD<\/jats:styled-content>\n                      and report baseline data analyses of its core study.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>\n                      The Enroll\u2010\n                      <jats:styled-content style=\"fixed-case\">HD<\/jats:styled-content>\n                      platform incorporates electronic data capture, biosampling, and a longitudinal observational study spanning four continents (ClinicalTrials.gov Identifier: NCT01574053). The primary study population includes\n                      <jats:styled-content style=\"fixed-case\">HD<\/jats:styled-content>\n                      gene expansion carriers (\n                      <jats:styled-content style=\"fixed-case\">HDGEC<\/jats:styled-content>\n                      s;\n                      <jats:styled-content style=\"fixed-case\">CAG<\/jats:styled-content>\n                      expansion \u226536), subdivided into manifest\/premanifest\n                      <jats:styled-content style=\"fixed-case\">HD<\/jats:styled-content>\n                      . The control population consists of genotype\u2010negative first\u2010degree relatives and family controls not genetically related. The study includes 10 core clinical assessments covering motor, cognitive, and behavioral domains.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>\n                      This data set comprises 1,534 participants (\n                      <jats:styled-content style=\"fixed-case\">HDGEC<\/jats:styled-content>\n                      = 1,071; controls = 463). Participant retention was high; 42 participants prematurely withdrew from the study. Mean \u00b1 standard deviation SD CAG repeat size was 43.5 \u00b1 3.5 for\n                      <jats:styled-content style=\"fixed-case\">HDGEC<\/jats:styled-content>\n                      s and 19.8 \u00b1 3.4 for controls. Motor and behavioral assessments identified numerical differences between controls and\n                      <jats:styled-content style=\"fixed-case\">HDGEC<\/jats:styled-content>\n                      s (manifest &gt; premanifest &gt; controls). Functional and independence assessments were generally similar for the premanifest and control groups with overlap in range of scores obtained. For the majority of cognitive tests, there were large differences between participants with manifest\n                      <jats:styled-content style=\"fixed-case\">HD<\/jats:styled-content>\n                      and all other groups.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>\n                      These first data from the Enroll\u2010\n                      <jats:styled-content style=\"fixed-case\">HD<\/jats:styled-content>\n                      clinical research platform demonstrate the maturity and potential of the platform in collecting high\u2010quality, clinically relevant data. Future data sets will be substantially larger as the platform expands longitudinally and regionally.\n                    <\/jats:p>\n                  <\/jats:sec>","DOI":"10.1002\/mdc3.12388","type":"journal-article","created":{"date-parts":[[2016,6,23]],"date-time":"2016-06-23T02:51:32Z","timestamp":1466650292000},"page":"212-224","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":181,"title":["Data Analytics from Enroll\u2010\n                    <scp>HD<\/scp>\n                    , a Global Clinical Research Platform for Huntington's Disease"],"prefix":"10.1002","volume":"4","author":[{"given":"Georg B.","family":"Landwehrmeyer","sequence":"first","affiliation":[{"name":"Department of Neurology University of Ulm Ulm Germany"},{"name":"CHDI Management\/CHDI Foundation Princeton New Jersey USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Cheryl J.","family":"Fitzer\u2010Attas","sequence":"additional","affiliation":[{"name":"CHDI Management\/CHDI Foundation Princeton New Jersey USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Joseph D.","family":"Giuliano","sequence":"additional","affiliation":[{"name":"CHDI Management\/CHDI Foundation Princeton New Jersey USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nilza","family":"Gon\u00e7alves","sequence":"additional","affiliation":[{"name":"Faculty of Medicine University of Lisbon Lisbon Portugal"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Karen E.","family":"Anderson","sequence":"additional","affiliation":[{"name":"MedStar Georgetown University Hospital &amp; Georgetown University Medical Center\u2013Huntington Disease Care, Education &amp; Research Center Washington DC USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Francisco","family":"Cardoso","sequence":"additional","affiliation":[{"name":"Movement Disorders Clinic, Medical School Universidade Federal de Minas Gerais Belo Horizonte Brazil"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Joaquim J.","family":"Ferreira","sequence":"additional","affiliation":[{"name":"Faculty of Medicine University of Lisbon Lisbon Portugal"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Tiago A.","family":"Mestre","sequence":"additional","affiliation":[{"name":"Parkinson's disease and Movement Disorders Center Division of Neurology Department of Medicine The Ottawa Hospital Research Institute University of Ottawa Ottawa Ontario Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Julie C.","family":"Stout","sequence":"additional","affiliation":[{"name":"School of Psychological Sciences Monash University Melbourne Victoria Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Cristina","family":"Sampaio","sequence":"additional","affiliation":[{"name":"CHDI Management\/CHDI Foundation Princeton New Jersey USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2016,6,22]]},"reference":[{"key":"e_1_2_8_2_1","volume-title":"Dementia Research and Care","author":"Organization for Economic Co\u2010operation and Development (OECD)"},{"key":"e_1_2_8_3_1","doi-asserted-by":"publisher","DOI":"10.1002\/mds.25075"},{"key":"e_1_2_8_4_1","doi-asserted-by":"publisher","DOI":"10.1093\/med\/9780199929146.003.0007"},{"key":"e_1_2_8_5_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.cell.2015.07.003"},{"key":"e_1_2_8_6_1","unstructured":"A worldwide observational study for Huntington's disease families.http:\/\/www.enroll-hd.org. 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