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

<h3>Background</h3> 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. <h3>Aims</h3> To assess the feasibility of conducting a 12-month linked study of lifestyle and clinical outcomes in people with HD. <h3>Methods</h3> 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. <h3>Results</h3> 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. <h3>Conclusions</h3> 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.

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Publication Details

Published
2024-09-01
DOI
https://doi.org/10.1136/jnnp-2024-ehdn.199
Primary Topic
Genetic Neurodegenerative Diseases
Type
article
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article

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

Emer P. Doheny, Nigel Kirby, Philip Pallmann, Anne Rosser et al.
Genetic Neurodegenerative Diseases
article

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

Emer P. Doheny, Nigel Kirby, Philip Pallmann, Anne Rosser, Monica Busse, Madeleine M. Lowery, Andreas Markoulidakis, Astri Arnesen, Cheney Drew, Myrsini Gianatsi, Hans H. Jung, Peter Holmans, Greg Witkowski, Esther Cubo
article en

Abstract

<h3>Background</h3> 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. <h3>Aims</h3> To assess the feasibility of conducting a 12-month linked study of lifestyle and clinical outcomes in people with HD. <h3>Methods</h3> 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. <h3>Results</h3> 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. <h3>Conclusions</h3> 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.

University College Dublin (IE), University Hospital of Zurich (CH), Huntington's Disease Association (GB), Hospital Universitario de Burgos (ES), Institute of Psychiatry and Neurology (PL), Cardiff University (GB)
Openalex Percentile: Top 84%
Genetic Neurodegenerative Diseases
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