Aims

This new working group will adopt a collaborative, staged approach to improve understanding and care at end of life for people with HD. This will be achieved through structured collaboration between clinicians, researchers, and third-sector organisations, with meaningful patient and public involvement and engagement (or “PPIE”) from the HD community embedded throughout all activities. This will ensure that our research questions are meaningful to the HD community, and that the evidence we will generate is meaningfully interpreted and widely disseminated.

We intend to establish a broad interdisciplinary perspective to underpin the work of the group. We have so far welcomed interest from neurologists, nurses, palliative care specialists, allied health professionals from across the multidisciplinary team, researchers, and third-sector representatives. PPIE representatives and third-sector collaborators will contribute to design, interpretation, and dissemination of all our group outputs.

 

As initial working group aims, we propose to:

  • Synthesise evidence across clinical practice, research and lived experience in relation to end of life in HD, for people with HD and HD family members.
  • Map existing evidence and practice relating to end of life and palliative care in HD internationally
  • Undertake a priority-setting exercise to identify and agree key research and clinical targets for improving end of life care in HD

Projects

Current projects under way to explore…

  • Attitudes to assisted dying among people from HD families
  • Experiences of end of life among family caregivers of people with HD
  • Healthcare professionals’ experiences of supporting HD families at end of life
  • What a “good death” may mean for people with HD
  • HD family members’ needs at end of life and how to prepare

Contact information

Lead Facilitator(s)
Sarah Gunn
University of Leicester and UK National Health Service (NHS), U.K.
Background: clinical psychologist and clinically-oriented researcher in HD mental wellbeing and end of life

Co-lead Facilitator(s)
Catherine Lyon
University of Leicester, U.K.
Background: extensive experience of nursing and care home management supporting people with HD at end of life

Associated EHDN Language Area Coordinator
Helen Finnegan Ford, Madrid, Spain

 
 
 

last update 13 February 2026