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F46 The European huntington’s disease network
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Journal Article
F46 The European huntington’s disease network
2021
Overview
The European Huntington’s Disease Network (EHDN), established in 2003, is a non-profit research network with the mission of advancing research, facilitating conduct of clinical trials, and improving clinical care in HD. EHDN forms a platform for clinicians, scientists, academics, patients, and family members to work together to achieve these goals.The EHDN offers membership to those with an interest in/directly affected by HD; >200 European HD clinical and basic science centres and >3400 individuals are members.EHDN hosts a bi-annual plenary meeting, one of the world’s largest conferences dedicated to Huntington’s disease. A fellowship exchange programme has been established, to facilitate training of young HD professionals from countries where HD care and facilities are developing.The EHDN is governed by an Executive Committee, responsible for overseeing activities and establishing scientific strategy, with a Scientific Bioethical Advisory Committee responsible for reviewing research proposals. EHDN Central Coordination manages network operations, with regional Language Area Coordinators as the bridge between the EHDN and the clinical centres, liaising with the HD patient and research community and monitoring Enroll-HD study and platform data.EHDN offers review of clinical trial and study protocols, with endorsement given for protocols of high scientific and ethical quality. This statement of endorsement is valued within the HD community.EHDN Working Groups and Task Forces address key HD research topics, supported by the Think Tank, experts with in-depth knowledge of EHDN scientific activities. EHDN supports researchers with identifying grant and funding opportunities and by awarding seed funds. Clinical data and/or biosamples from the Registry study are available to researchers (see EHDN Scientific Support poster).EHDN is supported by the CHDI Foundation and collaborates closely with CHDI and the Enroll-HD platform.www.ehdn.org
Publisher
BMJ Publishing Group LTD
Subject
