Getting involved with current research studies is a great way to help professionals in projects that will inevitably help the Huntington's community present and future.

University of Leicester

Irritability in Huntington's disease

Have you noticed feelings of irritability or frustration, or have other people said they have noticed this about you? If that sounds like you, we’d love to hear your story.

The Univercity of Leicester want to speak to people affected by Huntington's disease to hear about their experience of irritability and frustration. The aim is to help them better understand how irritability present and how people make sense of it.

What does it involve?

An interview lasting about an hour to tell us about your experiences of irritability. Your insights could really make a difference.

You will be paid £20 for attending an interview, which can be done over: Microsoft Teams, phone, in person or you can reply to our questions by email.

Who can take part?

We’re looking for people with a positive genetic test for Huntington’s disease with or without symptoms, aged 18 or over, who either:

  • Have noticed feelings of “irritability”, or 
  • Have had other people comment on their “irritability” (perhaps a doctor, nurse, friend or family member)

How to get involved

Please email

University College London

Caring for someone with Huntington's disease

We want to look at how people think and feel, how they respond to their thoughts and feelings, and what they do to cope when caring for someone living with Huntington’s disease.

What does it involve?

  • Online survey (duration: 30-45 minutes)
  • Option to enter a prize draw to win one of ten £25 Amazon vouchers

Who can take part?

You can get involved if you meet the following criteria:

  • Aged 18 years or over
  • Currently caring for a person living with Huntington’s disease (whose diagnosis was made by a healthcare professional such as a neurologist)
  • An information caregiver of a person living with Huntington’s disease (i.e. a spouse, family member, or friend who is not a professionally qualified caregiver)
  • Able to read and understand English to complete online questionnaires.

How to get involved

To find out more information or to take part in the survey click here

For queries, email Eli Kypraiou: 

University of Cambridge

Loneliness in Neurodegenerative disease

Loneliness and social isolation are related to poor mental and physical health. This project aims to investigate how individuals with neurogenerative disease are affected by loneliness and how it relates to social functioning. Some neurodegenerative diseases are associated with an early change in social functioning, potentially increasing social isolation. Individuals with a disability are disproportionally affected by loneliness and social isolation.

What does it involve?

Online questionnaires about:

  • Loneliness
  • Social isolation
  • Social functioning
  • Anxiety and depression

You can participate from anywhere, using a computer or any type of handheld device. It will take approximately 20 minutes.

Who can take part?

  • Huntington’s gene carriers with and without symptoms
  • Individuals diagnosed with Progressive Supranuclear Palsy, Frontotemporal Dementia or Parkinsons disease
  • Healthy individuals without a diagnosis of a neurodegenerative disease
  • You do not currently need to experience feelings of loneliness to participate in this study.

How to get involved

If you would like to participate, please contact Miriam Schaepers at

Want to hear about studies you can get involved in?