We aim to make quality of life assessment a routine and explicit consideration in care, management and clinical research in Huntington’s disease. This aim is strategically supported by a varied and enthusiastic international group of individuals from the breadth of the HD landscape, including patients, families, lay organisations, researchers, clinicians and care providers.
We are interested in actively championing and facilitating quality of life assessment and improvement in Huntington’s disease. Some of the projects we are involved in are listed below.
- Developing appropriate assessment tools to measure and chart quality of life in patients and carers.
- Creating an online care and management resource for the Huntington’s journey.
- Using psychological approaches to impact quality of life in Huntington’s.
Previous publications arising from this working group
School of Psychology and Clinical Languages Sciences, University of Reading, UK.
Hon. Consultant Clinical Psychologist Royal Berkshire NHS Foundation Trust, UK.
European Huntington’s Association Liaison Officer
Asunción Martínez, EHDN Lanco,