Year: 2024
Type: conference-abstract
Abstract: The European Huntington’s Disease Network (EHDN) 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 and EHDN hosts a bi-annual meeting, one of the world’s largest conferences dedicated to HD. EHDN Working Groups, Task Forces, and the Think Tank address key research topics, and EHDN further supports researchers by awarding seed funds, supporting consortia bids and identifying funding opportunities. EHDN partners with the International Parkinson and Movement Disorder Society on a series of HD online education courses and a fellowship exchange programme which facilitates training of young professionals from countries where HD care and facilities are developing. EHDN offers review of clinical trial and study protocols, providing an independent expert opinion, with endorsement given for protocols of high scientific and ethical quality. EHDN is governed by an Executive Committee, overseeing activities and scientific strategy, and a Scientific Bioethical Advisory Committee who advise on research proposals and clinical trial protocols. EHDN Central Coordination manages operations, with regional staff linking the EHDN and clinical centres, liaising with the HD patient and research community and monitoring Enroll-HD study and platform study data. Clinical data and/or biosamples from the Registry study are available to researchers. EHDN is financially supported by the CHDI Foundation.
Authors: Jenny Townhill, Tim McLean, Jamie Levey, Anne Rosser, Patrick Weydt, Christine Capper-Loup, Juliana Bronzova, Yury Seliverstov, Flaviano Giorgini, on behalf of EHDN Central Coordination
Language: English
Subfield: Cellular and Molecular Neuroscience
Field: Neuroscience
Domain: Life Sciences
Open Access status: gold
OpenAlex ID: W4402373702