The aim is to promote a psychological understanding of the lived experience of people affected by the Huntington’s disease gene and to develop and assess psychological interventions to improve psychological well-being.

Main goal
To conduct, promote and share quality research that increases our understanding of Huntington’s disease from a psychological perspective and to develop and test interventions to improve well-being and reduce distress.

Aims of the working group

  • To collate, distribute and evaluate evidence on new psychological interventions for people affected by HD and related disorders.
  • To carry out research to increase the evidence base on the efficacy of psychological interventions.
  • To collate and conduct research promoting a psychological understanding of the issues affecting people affected by HD.
  • To develop psychological guidance for family members, researchers and professionals.
  • To develop training materials for professionals to understand the value of psychological approaches to Huntington’s disease.
  • To provide a supportive and facilitative resource for all those interested in advancing psychological research to improve the lives of people affected by HD.


Completed projects:

We have recently completed a number of projects relevant to the group’s overall aim.

  • Our initial study on whether mindfulness could help people with low mood has now been completed and two publications (Eccles et al., 2020 and Eccles et al., 2021 – see Recent Publications below) have resulted. We found that participants considered the intervention acceptable and reported benefits. Difficulties were also reported, however, with recruitment, study measures and effectively measuring change.
  • Our major project, funded by the British Psychological Society, on reviewing the evidence on psychological therapies for people affected by Huntingdon’s disease is free to download from here. A fuller version is also available here. The study highlighted the lack of research conducted to date and hence the difficulty in making clear recommendations.

Ongoing projects:

  • Development of a guided self help treatment for anxiety among people affected by Huntington’s disease. This project has been funded by the Gossweiler Foundation (PI: Maria Dale) and is currently underway.
  • Understanding the experiences of people at risk of HD but who have chosen not to have the predictive test. A study is currently underway.
  • Understanding the experience of ‘irritability’ from the perspective of people diagnosed with HD. A study is currently underway.
  • Mapping the provision/availability of mental health/psychological support internationally. Work has just started on this so please get in touch if you would like to be involved.
  • Understanding the value of psychological formulation in working psychologically with people affected by HD. A paper is being drafted and should be available by Summer 2022.


Jane Simpson

Maria Dale

Associated EHDN Language Area Coordinator:
Hasina Hussain, EHDN Lanco,