F081 A naturalistic assessment of lifestyle in Huntington’s disease; results from the DOMINO-HD study

Drew, Cheney ORCID: https://orcid.org/0000-0002-4397-6252, Pallmann, Philip ORCID: https://orcid.org/0000-0001-8274-9696, Doheny, Emer, Gianatsi, Myrsini, Markoulidakis, Andreas, Kirby, Nigel, Lowery, Madeleine, Witkowski, Greg, Jung, Hans H, Cubo, Esther, Arnesen, Astri, Holmans, Peter, Rosser, Anne ORCID: https://orcid.org/0000-0002-4716-4753 and Busse, Monica ORCID: https://orcid.org/0000-0002-5331-5909 2024. F081 A naturalistic assessment of lifestyle in Huntington’s disease; results from the DOMINO-HD study. Journal of Neurology, Neurosurgery and Psychiatry 95 , A103. 10.1136/jnnp-2024-EHDN.199

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Abstract

Background The onset and progression of Huntington’s Disease (HD) can be influenced by variations in genetics, but also by a variety of environmental factors. There is evidence to suggest that aspects of lifestyle (physical activity, sleep and nutrition) may have a role to play in disease progression. Aims To assess the feasibility of conducting a 12-month linked study of lifestyle and clinical outcomes in people with HD. Methods Enroll-HD participants were recruited into a 12-month observational study within ± 8 weeks of their annual Enroll-HD assessment. At baseline, participants completed questionnaires relating to physical activity, nutrition and sleep. Each participant received a Fitbit Charge 4 which they were required to wear for the duration of the study and upload data via data synchronisation with their smartphone. Clinical outcomes were collected at baseline and 12 months at annual Enroll-HD visits and were obtained via a specific data request. Data were analysed descriptively in relation to pre-specified feasibility outcomes. Results We recruited 82 participants who provided a complete baseline dataset for analysis, with 75 participants providing follow-up data at 12 months. Retention, physical activity, sleep and nutrition data completion, and linkage to Enroll-HD data met pre-specified feasibility thresholds. It was not feasible to link genetic data to Enroll-HD data. Conclusions We have demonstrated that it is possible to conduct a longitudinal study of lifestyle in people with HD and established methods for assimilating digital sensor and specific outcome data alongside clinical measures captured via Enroll-HD.

Item Type:	Short Communication
Date Type:	Publication
Status:	Published
Schools:	Schools > Medicine Research Institutes & Centres > Centre for Trials Research (CNTRR)
Publisher:	BMJ Publishing Group
ISSN:	0022-3050
Funders:	JPND
Last Modified:	20 Jan 2026 16:37
URI:	https://orca.cardiff.ac.uk/id/eprint/184048

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