Multi-Domain Lifestyle Targets for Improving ProgNOsis in Huntington?s Disease

Huntington?s Disease (HD) is a progressive, life-limiting neurodegenerative disease. It has devastating consequences for the individual and their families. No current treatment to modify the course of the disease exists. Improved evidence-based symptom assessment is crucial to optimising disease management. This project aims to identify key environmental factors that may be responsive in targeted interventions with a view towards optimising disease management for individuals with HD. Our multi-national and inter/multi-disciplinary consortium will harness the power of advanced digital technologies to inform our understanding of the causal role of multi-domain environmental factors in HD. We will integrate prospective, sensor derived physical activity, and sleep data in a daily life context with nutrition assessments and commonly used clinical HD severity outcomes and quality of life measures to explore the interplay between multi-domain environmental factors and HD outcomes. Our approach will include predictive outcomes modelling to identify modifiable environmental factors that influence HD outcomes. Genetic risk factors including CAG triplet repeat length and other known and emerging genetic modifiers will also be respected in this analysis. This emerging information will inform development of personalised multi-modal environmental interventions. Our activities will be embedded within an established, well-characterised multi-centre European HD cohort to ensure cross-cultural and social relevance. People with HD, their families and carers are involved as research partners. Their input will allow us to understand individual and family needs, abilities and preferences in the context of their disease. The general view that HD, as a single gene disorder, is a paradigm for more common neurodegenerative disorders with heterogeneous causes (including Alzheimer?s and Parkinson?s disease) significantly broadens the scope and potential public health impact of this work.

Award Date
17 September 2018
Award Value
Principal Investigator
Dr Madeleine Lowery
Host Institution
University College Dublin
Joint Programming Initiative in Neurodegenerative Diseases