{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,2]],"date-time":"2026-05-02T01:53:11Z","timestamp":1777686791949,"version":"3.51.4"},"reference-count":3,"publisher":"SAGE Publications","issue":"1","license":[{"start":{"date-parts":[[2023,5,2]],"date-time":"2023-05-02T00:00:00Z","timestamp":1682985600000},"content-version":"unspecified","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["JHD"],"published-print":{"date-parts":[[2023,5,2]]},"abstract":"<jats:p>Recent years have been turbulent ones for the Huntington\u2019s disease (HD) community. Three clinical trials for HD, including the first Phase 3 trial of a potentially disease modifying genetic therapy for HD, were all brought to a halt in March of 2021. 2022 brought more study roadblocks and an additional trial termination. As HD science progresses and larger scale trials become more frequent in the community, HD families are faced with the difficult reality that clinical research rarely results in a new drug hitting the market. To better understand how the HD community can be prepared for the ups and downs that accompany an expanding clinical research pipeline, the Huntington\u2019s Disease Society of America (HDSA) spoke with members of the Huntington\u2019s Disease Coalition for Patient Engagement (HD-COPE). This group of global advocates led by HDSA and the Huntington\u2019s Society of Canada (HSC) collaborates with pharmaceutical companies to ensure that HD voices are represented in the planning of clinical trials. These conversations allowed HDSA to summarize how the HD community can be best supported through the clinical research process in three key areas: engagement, support, and education.<\/jats:p>","DOI":"10.3233\/jhd-230565","type":"journal-article","created":{"date-parts":[[2023,4,4]],"date-time":"2023-04-04T11:51:33Z","timestamp":1680609093000},"page":"71-76","source":"Crossref","is-referenced-by-count":3,"title":["Supporting Huntington\u2019s Disease Families Through the Ups and Downs of Clinical Trials"],"prefix":"10.1177","volume":"12","author":[{"given":"Kelly M.","family":"Andrew","sequence":"first","affiliation":[{"name":"Huntington\u2019s Disease Society of America, New York, NY, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Leora M.","family":"Fox","sequence":"additional","affiliation":[{"name":"Huntington\u2019s Disease Society of America, New York, NY, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"179","reference":[{"key":"10.3233\/JHD-230565_ref5","unstructured":"Novartis. Community update: Status of VIBRANT-HD, the study of branaplam\/LMI070 in Huntington\u2019s Disease. 2022."},{"issue":"Suppl 1","key":"10.3233\/JHD-230565_ref8","first-page":"A24","article-title":"F14 Collaborating with the community to conduct clinical trials in huntington\u2019s disease: Lessons from the tominersen phase iii generation HD1 study","volume":"92","author":"Liddy","year":"2021","journal-title":"J Neurol Neurosurg Psychiatry"},{"key":"10.3233\/JHD-230565_ref9","unstructured":"Andrew K , Fox L HDSA\u2019s HD trialfinder: Expanding awareness of huntington\u2019s disease clinical studies in North America, J Huntingt Dis Abstr 29th Annu Meet Huntingt Study Group HSG 2022 (2022); 11(Supplement 1)."}],"container-title":["Journal of Huntington's Disease"],"original-title":[],"link":[{"URL":"https:\/\/content.iospress.com\/download?id=10.3233\/JHD-230565","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,4,29]],"date-time":"2026-04-29T08:56:13Z","timestamp":1777452973000},"score":1,"resource":{"primary":{"URL":"https:\/\/journals.sagepub.com\/doi\/full\/10.3233\/JHD-230565"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2023,5,2]]},"references-count":3,"journal-issue":{"issue":"1"},"URL":"https:\/\/doi.org\/10.3233\/jhd-230565","relation":{},"ISSN":["1879-6397","1879-6400"],"issn-type":[{"value":"1879-6397","type":"print"},{"value":"1879-6400","type":"electronic"}],"subject":[],"published":{"date-parts":[[2023,5,2]]}}}