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.


Understanding gaps in mental health support for people affected by Huntington's disease

University of Leicester

About the study

The aim is to understand more about people’s experiences of mental healthcare in relation to Huntington's disease, and how things could be made better. This study is being led by Dr Sarah Gunn, a researcher and clinical psychologist from the University of Leicester and is open to those with the gene, family members and professionals.

What does it involve?

A confidential interview with one of the research team over video chat (Microsoft Teams) or by phone. If you’re fairly local to Leicester, an in-person meeting can be arranged.

The interview would last about 45-60 minutes, and you will receive £25 as a thank you for your time.

During the interview, you will be asked:

  • For people who carry the gene expansion: what your experiences of accessing mental healthcare have been like, and what has encouraged you to seek support or put you off.
  • For family members: your experiences of seeking support for your own mental health, and how it’s been helping your family member(s) with Huntington's disease seek mental health support.
  • For professionals: your experiences and reflections on what supports good mental healthcare for families affected by Huntington's disease, and what gets in the way.

Who can take part

  • People who carry the Huntington's disease gene expansion, whether you have “manifest” physical symptoms or not.
  • People from families affected by Huntington's disease who don’t carry the gene expansion, and who have provided care and support to a family member with Huntington's disease.
  • Healthcare staff who support people with Huntington's disease in relation to their mental health. This could be (but is not limited to) psychologists, (neuro)psychiatrists, counsellors and nurses.

How to get involved

Please email Suzanne on smb91@leicester.ac.uk

You will receive £25 as a thank you for your time.

Study closes 30 June 2025


Attitudes towards Huntington’s disease genetic testing

Deciding whether or not to go through genetic testing for Huntington's disease is a difficult decision. That’s why a team of researchers (Professor Simona Botti at the London Business School, Dr. Selin Goksel at Vrije Universiteit Amsterdam, and Dr. Nazli Gurdamar-Okutur at Koc University) has created a research study which aims to understand the psychological consequences of testing for Huntington’s disease. 

What does it involve?

The study consists of filling in a short online survey that takes approximately five minutes.

Who can take part

The researchers are looking for individuals who have already started developing symptoms of the Huntington’s disease. The survey includes several questions assessing participants’ current psychological wellbeing. The researchers will donate £2 for each participant who fills out the survey completely to the Huntington’s Disease Association.

How to get involved

If you are interested, please complete the survey


Understanding individual experiences of receiving a diagnosis of Huntington’s disease in people with no known family history

University of Birmingham

About the study

We are interested in the experience of being diagnosed with Huntington’s disease in people who have no known family history of Huntington's. The purpose of this study is to hear and make sense of your experience of receiving a diagnosis of Huntington's disease, with no known family history. We want to better understand your experience and hope to inform awareness and clinical practices.

Who can take part

  • Over the age of 18
  • Diagnosed with Huntington’s disease (not through predictive genetic testing)
  • Participants must have capacity to consent and means to communicate independently with minor reasonable adjustments, such as increased interview time and various modes of information sharing (written, shorter chunks).

What does it involve

Arranging a mutually convenient time to meet. The interview will consist of a set of questions about your experiences, but you can talk about whatever is important to you. The interview and debrief will last a maximum of 90 minutes, in person or on an online remote platform. 
You will have the option to engage in the interview with a companion present and adjustments can be made to ensure that you feel as comfortable as possible. 

How to take part

Please email Jordan, Trainee Clinical Psychologist on jxg361@student.bham.ac.uk 

Study closes 31 March 2025


Understanding how Huntington’s affects the wellbeing and relationships of people with the disease, their families and caregivers

We want to explore the psychosocial impact of Huntington’s disease on people who have it and on family caregivers, and to explore the impact of Huntington’s disease on family dynamics. We hope to understand more about Huntington’s disease, which could help guide development of Huntington’s disease-specific support that enhances quality of life for both people with Huntington’s disease and family caregivers.

What does it involve?

They will ask you some questions about your experience of Huntington’s disease and how it has affected you and your wellbeing.

If you would like to help us with this, please contact Paige (the lead researcher) who will get in touch with an information sheet about the study. If you’re happy, Paige will then arrange your interview either through video call (Teams), telephone, or in person if you’re reasonably local to Leicester (whatever suits you best). For online or telephone participation, the information sheet and consent form will be provided by email, but we are also happy to post them to you if that’s easier.

Paige will interview family members as a pair for around one hour. The interview will be recorded, as we need to analyse what you say later. At the end of the interview, we will thank you for your time and give you a debrief form, which will explain the research aims and the right to withdraw.

Upon completion, participants will be compensated for their time (£25 per person).

Interviews are expected to last for around one hour

Who can take part

  • 18 years old or above
  • Be gene positive with Huntington’s disease
  • Be a family member who has at some point provided care to someone with Huntington’s disease

They are looking to interview pairs of people – one person with Huntington’s disease, and one family caregiver of that person (so two people from one family).

How to get involved

Please email Paige pl230@leicester.ac.uk

This study will close on April 2025.


The HD-EAT Pilot Study

University of Hull

In exploring weight loss in Huntington's disease, Huntington's disease professionals and service users were interviewed to learn more about attitudes towards weight loss in Huntington's and common treatment approaches. These two groups of interviewees co-produced a new self-report questionnaire, the Huntington’s Disease Eating Attitudes Test (HD-EAT), to assess potential deficits in eating abilities and behaviours. This study will compare results on the HD-EAT questionnaire with results on other popular food and eating questionnaires, and measures of quality of life.

Study aims

  • To measure different psychosocial aspects of Huntington's disease patients’ attitudes towards eating using an online battery of mood and eating questionnaires.
  • To pilot an online version of the Huntington's disease Eating Attitudes Test (HD-EAT), a Huntington's-specific questionnaire on eating behaviours.

What does it involve?

Participants will be asked to complete a questionnaire covering general psychological wellbeing and attitudes towards food and eating, including both validated and established questionnaires, as well as piloting the Huntington's Disease Eating Attitudes Test (HD-EAT), a Huntington's-specific eating questionnaire.

Who can take part

The previous research study conducted by the same research team based on Enroll-HD data and therefore recruiting participants who are part of Enroll-HD means that these populations are aligned in terms of the inclusion and exclusion criteria, making the findings of the database review valid and applicable to the research population.

However, potential participants who meet the following criteria may be eligible for recruitment to the study.

Inclusion Criteria:

  • Aged 18 or over at the time of recruitment.
  • Genetic confirmation of the Huntington's disease gene expansion, defined as a CAG repeat length of ≥40 CAG repeats on the long allele. This information will be self-reported by the prospective participant.

How to get involved

Please email Callum on c.schofield-2019@hull.ac.uk

Download participation sheet

This study will close July 2025.

Development and validation of Huntington's disease-specific quality of life tools

Galen Research Limited

About the study

We are looking for people like you to complete a quality-of-life questionnaire on two occasions.

The questions have been created from talking to partners of people living with Huntington’s disease across Europe.

  • Are you a partner of somebody living with Huntington’s disease?
  • Have you had a predictive test for Huntington's disease, tested positive and are currently well?
  • Are you a partner of somebody who has tested gene-positive for Huntington’s disease

 

How to get involved

For more information or to sign up please call 0161 701 9136 or email genetics.research@mft.nhs.uk

 

This study closes on 1 September 2025.

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