European Huntingtons disease network: key updates in advancing research, facilitating clinical trials, and improving care [Conference Abstract]

Bronzova, Juliana, Deeprose, Catherine, Capper-Loup, Christine, Giorgini, Flaviano, Kolodziej, Kinga, Levey, Jamie, Petersn, sa, Townhill, Jenny and Weydt, Patrick 2026. European Huntingtons disease network: key updates in advancing research, facilitating clinical trials, and improving care [Conference Abstract]. Journal of Neurology, Neurosurgery and Psychiatry 97 (Supp 2) , A179. 10.1136/jnnp-2026-ehdn.381

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Abstract

Background: The European Huntington’s Disease Network (EHDN) is an independent, non-profit research network advancing research, facilitating clinical trials, and improving clinical care to enhance quality of life for people impacted by Huntington’s disease (HD). Aims: To describe how EHDN delivers its mission through its organisational structure, initiatives, and activities. Methods: EHDN members include clinicians, scientists, and people impacted by HD. Within EHDN’s committees and groups, the Executive Committee provides governance and strategy, the Think Tank identifies scientific priorities, and the Scientific and Bioethical Advisory Committee reviews protocols for endorsement, and research and funding applications. Member-led Working Groups and Task Forces address priority research and clinical questions. Central Coordination provides an operational hub, and EHDN staff have a key role in Enroll-HD management, with direct support for sites across Europe/Australasia provided by regional Language Area Coordinators (Lancos). Results: EHDN has awarded >100 Seed Funds and recently initiated Strategic Funding. Impactful outputs from Working Groups and Task Forces include clinical practice guidelines, and >6,000 publications include members as authors. EHDN has endorsed >40 clinical trials and studies since 2005, supporting therapeutic development while maintaining rigorous scientific and ethical standards. Lancos manage and monitor the Enroll-HD clinical sites in Europe/Australasia, ensuring high-quality data and biosamples. Educational initiatives include the Fellowship Programme and courses that strengthen HD research and care capacity in underserved regions. Communication activities support transparent dissemination of research findings and community engagement. Conclusions: EHDN advances HD science and care globally through funding, research coordination, clinical trial support, education, and communication.

Item Type:	Short Communication
Date Type:	Publication
Status:	Published
Schools:	Schools > Biosciences
Publisher:	BMJ Publishing Group
ISSN:	0022-3050
Last Modified:	28 Oct 2026 12:15
URI:	https://orca.cardiff.ac.uk/id/eprint/190497

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