{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,2]],"date-time":"2026-05-02T01:25:53Z","timestamp":1777685153369,"version":"3.51.4"},"reference-count":15,"publisher":"SAGE Publications","issue":"4","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["JHD"],"published-print":{"date-parts":[[2019,10,24]]},"DOI":"10.3233\/jhd-190365","type":"journal-article","created":{"date-parts":[[2019,7,30]],"date-time":"2019-07-30T11:30:08Z","timestamp":1564486208000},"page":"435-441","source":"Crossref","is-referenced-by-count":2,"title":["The Prospective Huntington At-Risk Observational Study (PHAROS): The Emotional Well-Being, Safety and Feasibility of Long-Term Research Participation"],"prefix":"10.1177","volume":"8","author":[{"given":"Elise","family":"Kayson","sequence":"first","affiliation":[{"name":"Center for Health + Technology\/Clinical Trials Coordination Center, University of Rochester, Rochester, NY, USA"},{"name":"Department of Neurology, University of Rochester, Rochester, NY, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"name":"on behalf of The Huntington Study Group PHAROS Investigators","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Shirley","family":"Eberly","sequence":"additional","affiliation":[{"name":"Department of Biostatistics and Computational Biology, University of Rochester, Rochester, NY, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Karen E.","family":"Anderson","sequence":"additional","affiliation":[{"name":"Department of Psychiatry, Research Division and Department of Neurology, Georgetown University, Washington, DC, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Karen","family":"Marder","sequence":"additional","affiliation":[{"name":"Columbia University Medical Center, New York, NY, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Ira","family":"Shoulson","sequence":"additional","affiliation":[{"name":"Department of Neurology, University of Rochester, Rochester, NY, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"David","family":"Oakes","sequence":"additional","affiliation":[{"name":"Department of Biostatistics and Computational Biology, University of Rochester, Rochester, NY, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Anne B.","family":"Young","sequence":"additional","affiliation":[{"name":"Department of Neurology, Massachusetts General Hospital, Harvard Medical School, Boston, MA, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Kevin","family":"Biglan","sequence":"additional","affiliation":[{"name":"Department of Neurology, University of Rochester, Rochester, NY, USA"},{"name":"Eli Lilly and Company, Indianapolis, IN, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Steven","family":"Hersch","sequence":"additional","affiliation":[{"name":"Department of Neurology, Massachusetts General Hospital, Harvard Medical School, Boston, MA, USA"},{"name":"Voyager Therapeutics, Cambridge, MA, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"179","reference":[{"key":"10.3233\/JHD-190365_ref1","doi-asserted-by":"crossref","first-page":"991","DOI":"10.1001\/archneur.63.7.991","article-title":"At risk for Huntington disease: The PHAROS (Prospective Huntington At Risk Observational Study) cohort enrolled","volume":"63","author":"Huntington Study Group PHAROS Investigators (Shoulson I, primary author)","year":"2006","journal-title":"Arch Neurol"},{"key":"10.3233\/JHD-190365_ref2","doi-asserted-by":"crossref","first-page":"971","DOI":"10.1016\/0092-8674(93)90585-E","article-title":"A novel gene containing a trinucleotide repeat that is expanded and unstable on Huntington\u2019s disease chromosomes","volume":"72","author":"Huntington\u2019s Disease Collaborative Research Group","year":"1993","journal-title":"Cell"},{"key":"10.3233\/JHD-190365_ref3","doi-asserted-by":"crossref","first-page":"387","DOI":"10.1038\/ng0893-387","article-title":"Trinucleotide repeat length instability and age of onset in Huntington\u2019s disease","volume":"4","author":"Duyao","year":"1993","journal-title":"Nat Genet"},{"key":"10.3233\/JHD-190365_ref4","doi-asserted-by":"crossref","first-page":"136","DOI":"10.1002\/mds.870110204","article-title":"Unified Huntington\u2019s Disease Rating Scale: Reliability and consistency","volume":"11","author":"Huntington Study Group","year":"1996","journal-title":"Mov Disord"},{"key":"10.3233\/JHD-190365_ref5","doi-asserted-by":"crossref","first-page":"893","DOI":"10.1037\/0022-006X.56.6.893","article-title":"An inventory for measuring clinical anxiety: Psychometric properties","volume":"56","author":"Beck","year":"1988","journal-title":"J Consult Clin Psychol"},{"key":"10.3233\/JHD-190365_ref6","unstructured":"Beck AT , Steer RA . Manual for the Beck Hopelessness Scale, San Antonio, TX: Psychological Corp; 1988."},{"issue":"12","key":"10.3233\/JHD-190365_ref8","doi-asserted-by":"crossref","first-page":"1193","DOI":"10.1016\/S1474-4422(14)70238-8","article-title":"Prediction of manifest Huntington\u2019s disease with clinical and imaging measures: A prospective observational study","volume":"13","author":"Paulsen","year":"2014","journal-title":"Lancet Neurol"},{"issue":"3","key":"10.3233\/JHD-190365_ref9","first-page":"11","article-title":"Monitoring reportable events and unanticipated problems: The PHAROS and PREDICT studies of Huntington\u2019s disease","volume":"29","author":"Hersch","year":"2007","journal-title":"IRB: Ethics & Human Research"},{"issue":"4","key":"10.3233\/JHD-190365_ref11","doi-asserted-by":"crossref","first-page":"725","DOI":"10.1176\/appi.ajp.162.4.725","article-title":"Critical periods of suicide risk in Huntington\u2019s disease","volume":"162","author":"Paulsen","year":"2005","journal-title":"Am J Psychiatry"},{"key":"10.3233\/JHD-190365_ref12","doi-asserted-by":"crossref","first-page":"2548","DOI":"10.1007\/s00415-018-9013-6","article-title":"Risk factors of suicidal ideation in Huntington\u2019s disease: Literature review and data from Enroll-HD","volume":"265","author":"Honrath","year":"2018","journal-title":"J Neurol"},{"issue":"2","key":"10.3233\/JHD-190365_ref13","doi-asserted-by":"crossref","first-page":"152","DOI":"10.1212\/WNL.0000000000003478","article-title":"A randomized, double-blind, placebo-controlled trial of coenzyme Q10 in Huntington disease","volume":"88","author":"McGarry","year":"2017","journal-title":"Neurology"},{"issue":"6","key":"10.3233\/JHD-190365_ref14","doi-asserted-by":"crossref","first-page":"594","DOI":"10.1212\/WNL.0000000000004209","article-title":"The CREST-E study of creatine for Huntington disease: A randomized controlled trial","volume":"89","author":"Hersch","year":"2017","journal-title":"Neurology"},{"issue":"6","key":"10.3233\/JHD-190365_ref15","doi-asserted-by":"crossref","first-page":"661","DOI":"10.4088\/JCP.14com09235","article-title":"Endpoints in preclinical Alzheimer\u2019s disease trials","volume":"75","author":"Reiman","year":"2014","journal-title":"J Clin Psychiatry"},{"key":"10.3233\/JHD-190365_ref16","doi-asserted-by":"crossref","first-page":"321","DOI":"10.3233\/JAD-2011-0059","article-title":"Alzheimer\u2019s Prevention Initiative: A plan to accelerate the evaluation of presymptomatic treatments","volume":"26 Suppl 3","author":"Reiman","year":"2011","journal-title":"J Alzheimers Dis"},{"key":"10.3233\/JHD-190365_ref17","doi-asserted-by":"crossref","first-page":"850","DOI":"10.1212\/WNL.0000000000000187","article-title":"PRECREST: A phase II prevention and biomarker trial of creatine in at-risk Huntington disease","volume":"82","author":"Rosas","year":"2014","journal-title":"Neurology"}],"container-title":["Journal of Huntington's Disease"],"original-title":[],"link":[{"URL":"https:\/\/content.iospress.com\/download?id=10.3233\/JHD-190365","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,4,29]],"date-time":"2026-04-29T08:50:55Z","timestamp":1777452655000},"score":1,"resource":{"primary":{"URL":"https:\/\/journals.sagepub.com\/doi\/full\/10.3233\/JHD-190365"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2019,10,24]]},"references-count":15,"journal-issue":{"issue":"4"},"URL":"https:\/\/doi.org\/10.3233\/jhd-190365","relation":{},"ISSN":["1879-6397","1879-6400"],"issn-type":[{"value":"1879-6397","type":"print"},{"value":"1879-6400","type":"electronic"}],"subject":[],"published":{"date-parts":[[2019,10,24]]}}}