Beyond the guidelines: development of clinical resources to support physiotherapy management in late-stage Huntington’s disease [Conference Abstract]

Fritz, Nora, Filip, Magdalena, Ikizgul, Zafer, Jones, Una ORCID: https://orcid.org/0000-0001-7156-8531, Kegelmeyer, Deb, Kloos, Anne, Moore, Heather, Muratori, Lisa, Quinn, Lori, Paul-Carreon, Richie, Sands, Ruth, Thangaramanujam, Muthukumaran and Ekwall, Camilla 2026. Beyond the guidelines: development of clinical resources to support physiotherapy management in late-stage Huntington’s disease [Conference Abstract]. Journal of Neurology, Neurosurgery and Psychiatry 97 (Supp 2) , A122. 10.1136/jnnp-2026-ehdn.271

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Abstract

Background: Physiotherapy is recognised as a key component of multidisciplinary care for people with Huntington’s disease (HD), supporting mobility, function, participation, and quality of life. The European Huntington’s Disease Network (EHDN) Physiotherapy Working Group (PWG) promotes evidence-based practice through clinical guidelines, education, and international collaboration. However, access to specialist knowledge and peer support remains variable across the UK. Aims: To enhance knowledge, confidence, and professional connectivity among physiotherapists and physiotherapy assistants working with people affected by HD across the UK. Methods: The HD Association England and Wales hosted an online learning and sharing session on behalf of UK members of the EHDN PWG. Expert presentations covered current evidence and future directions in HD physiotherapy, clinical challenges, specialist service delivery, and the work of the EHDN PWG. An interactive discussion facilitated knowledge exchange and collaboration. Participant feedback was collected post-event. Outcomes: Clinicians (n=67) attended from across England, Scotland, Wales, and Northern Ireland. Among respondents, 100% (38/38) agreed that their understanding of physiotherapy in HD had improved, 100% (37/37) reported greater awareness of available resources and support, and 93.5% (29/31) felt better prepared to work with people affected by HD. The session also initiated a UK physiotherapy email network, with 15 members joining within days of its launch. Conclusion: Targeted national education and networking initiatives can support translation of evidence into practice, strengthen workforce capability, and foster collaboration. The emerging UK physiotherapy network offers a platform to support implementation of EHDN recommendations and share best practice physiotherapy in HD care.

Item Type:	Short Communication
Date Type:	Publication
Status:	Published
Schools:	Schools > Healthcare Sciences
Publisher:	BMJ Publishing Group
ISSN:	0022-3050
Last Modified:	27 Oct 2026 15:16
URI:	https://orca.cardiff.ac.uk/id/eprint/190469

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