K005 Interdisciplinary collaboration in Huntington’s disease: EHDN working groups and task forces
Year: 2024
Type: conference-abstract
Abstract: Background The European Huntington’s Disease Network (EHDN) comprises 15 active Working Groups (WGs) and three Task Forces (TFs) dedicated to addressing various aspects of Huntington’s disease (HD). Aims The primary aim of the EHDN Working Groups and Task Forces is to facilitate interdisciplinary collaboration to advance research, improve clinical care, and enhance the quality of life for those affected by HD. Methods EHDN Working Groups and Task Forces operate by bringing together experts and stakeholders to discuss and prioritize research questions, develop guidelines, and propose innovative projects. Regular meetings, workshops, and conferences are held to foster collaboration and share progress. Results Among recents accomplishment of the EHDN WGs and TFs are a thematic podcast by the Pediatric WG and publication of the clinical review on juvenile HD, publication by the Imaging WG of the recommendations on HD clinical trials facilitation by neuroimaging, development by the Incidental Findings TF of the best practice guidelines on incidental findings in genomic studies in HD. Other activities of the EHDN WG and TFs include further development and introduction of HD biomarkers, research of the fundamental underpinnings of the disease, search for genetic modifiers of HD, deep phenotyping of various HD clinical aspects, development of advanced therapies and surgical delivery of medicinal products, as well as improvement of the multidisciplinary management of patients. Conclusions EHDN Working Groups and Task Forces play a crucial role in the network’s mission to improve outcomes for individuals affected by Huntington’s disease.
Authors: Yury Seliverstov, Jamie Levey, Anne Rosser, Patrick Weydt, Christine Capper-Loup, Jean-Marc Burgunder, Sandrine Humbert, Juliana Bronzova, 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: W4402374369