ASCEND-HD: Advancing Support and Care for Emotional Needs and Distress in Huntington's Disease

Huntington’s disease (HD) is a neurodegenerative, inherited condition with typical onset between 30-50 years. It causes physical, cognitive and emotional deterioration, and premature death. UK HD prevalence has doubled since 1990, with 8,000 people affected and 32,000 at risk. Worldwide, HD affects five people per 100,000. HD severely impacts mental wellbeing, including depression, anxiety, and suicidality. However, these difficulties are inadequately understood, affected individuals and families struggle to access informed, effective mental healthcare, and routes to meaningful systemic change are lacking. As an HD-specialist clinical psychologist and researcher, with lived experience of HD myself, I am uniquely placed to change this. I will lead ASCEND-HD, a transformative multi-methods programme of much-needed discovery research employing a Theory of Change model and co-production with experts by experience. Combining well-established and highly-novel methods, we will develop comprehensive understandings of how HD affects wellbeing of individuals and families, and of barriers and facilitators to a step-change in HD wellbeing support. I will then co-produce novel evidence-based guidance and resources for understanding mental wellbeing and support needs among HD families. Working with research, clinical and third-sector networks, these transformative tools will shape future interdisciplinary HD wellbeing research internationally, informing innovative new research and real-world change.