K005 Interdisciplinary collaboration in Huntington’s disease: EHDN working groups and task forces

<h3>Background</h3> 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). <h3>Aims</h3> 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. <h3>Methods</h3> 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. <h3>Results</h3> 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. <h3>Conclusions</h3> 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.

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Published
2024-09-01
DOI
https://doi.org/10.1136/jnnp-2024-ehdn.354
Primary Topic
Biomedical Ethics and Regulation
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article
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article

K005 Interdisciplinary collaboration in Huntington’s disease: EHDN working groups and task forces

Christine Capper-Loup, Patrick Weydt, Jean‐Marc Burgunder, Sandrine Humbert et al.
Biomedical Ethics and Regulation
article

K005 Interdisciplinary collaboration in Huntington’s disease: EHDN working groups and task forces

Christine Capper-Loup, Patrick Weydt, Jean‐Marc Burgunder, Sandrine Humbert, Flaviano Giorgini, Jamie Levey, Anne Rosser, Yury Seliverstov, Juliana Bronzova
article en

Abstract

<h3>Background</h3> 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). <h3>Aims</h3> 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. <h3>Methods</h3> 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. <h3>Results</h3> 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. <h3>Conclusions</h3> 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.

Centre National de la Recherche Scientifique (FR), University of Leicester (GB), Inserm (FR), Universität Ulm (DE), University Hospital Bonn (DE), Sorbonne Université (FR), Institut du Cerveau (FR), European Huntington's Disease Network, Cardiff University (GB)
Partnerships for the goals
Openalex Percentile: Top 80%
Biomedical Ethics and Regulation
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