Article Text
Abstract
The European Huntington’s Disease Network (EHDN), established in 2003, is a non-profit research network with the mission of advancing research, facilitating clinical trials, and improving clinical care in HD. EHDN creates a platform for clinicians, scientists, academics, patients, and family members to work together to achieve these goals. Membership of EHDN is open 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. Parallel sessions are dedicated to the latest scientific research, best practise in clinical care and clinical trials. EHDN Working Groups and Task Forces address key research topics, supported by the Think Tank experts with in-depth knowledge of HD and EHDN scientific activities. EHDN supports researchers with identifying grants and funding opportunities and awarding seed funds. An established fellowship exchange programme facilitates training of young HD professionals from countries where HD care and facilities are developing. 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 as an independent expert opinion. Clinical data and/or biosamples from the Registry study are available to researchers. The EHDN is governed by an Executive Committee, responsible for overseeing activities and establishing scientific strategy, and a Scientific Bioethical Advisory Committee responsible for advising on research proposals and clinical trial protocols. 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 study data. EHDN is supported by the CHDI Foundation and collaborates closely with CHDI and the Enroll-HD platform. www.ehdn.org