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.
Living with an intermediate allele or reduced penetrance rate predictive test result for Huntington’s disease
University of Leicester
About the study
This study aims to understand how it feels to live with an 'intermediate allele' or 'reduced penetrance rate' result after predictive testing for Huntington’s disease. Intermediate allele results are those with 27-35 CAG repeats; they will not develop Huntington's disease themselves, but they are at risk of passing the gene to their children. Reduced penetrance rate results are those with 36-39 CAG repeats, and these individuals may or may not develop the disease themselves.
Who can take part
- You must have received an intermediate allele or reduced penetrance rate predictive test result
- Tested at least six months prior to participating in the study
- You must be aged 18 years or older
What does it involve
An interview with the lead researcher (Nicola Dilley) to explore what it is like to receive one of these two types of test results and what it is like to live with it.
Interviews will be conducted via Microsoft Teams or can be offered face-to-face for those living locally to Leicester. Your interview would last up to 60 minutes, though it may be shorter or longer, depending on how much you want to say. We may also be able to offer the option to discuss by email, if an interview isn’t something you feel comfortable to do.
You will receive £25 per hour as a thank you for your time.
How to take part
Study closes 1 May 2026
Development and validation of Huntington's disease-specific quality of life tools
Galen Research Limited
About the study
Are you a partner of somebody living with Huntington’s disease? Galen Research Limited would like your views on a Quality of Life questionnaire that they are developing.
They are hoping to speak to partners of someone who has had a predictive test for Huntington's disease, tested positive, and and is currently well.
How to get involved
This study closes on 1 September 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
This study will close July 2025.
Huntington’s disease caregivers’ mental health and wellbeing: what information is relevant?
University of Wolverhampton
About the study
Caring for people with Huntington’s disease can have an impact on mental health and wellbeing.
This research project will explore your experience of helping and supporting someone with Huntington’s disease, and the journey to acquire relevant knowledge and resources relevant to symptom management.
Study aims
This study aims to explore lived experiences of caring for people with Huntington's disease, and its impact on caregivers’ mental health and wellbeing. It will also explore the caregivers’ views of available knowledge and support.
Expected outcomes are to:
- Outline caregivers’ views of Huntington's disease symptoms that affect their mental health and wellbeing
- Explore caregivers’ views on available knowledge to manage Huntington's disease symptoms
- Explore caregivers’ views on the management of their mental health and wellbeing
- Contribute to current literature
- Complete Patricia’s MSc in Psychology of Mental health and Wellbeing
Who can take part
Participants must be:
- An adult (18 years of age or older)
- A caregiver for a relative / friend with a diagnosis of Huntington's disease
- English-speaking and residing in United Kingdom
- Willing to attend a semi-structured interview online
- Unknown to the researcher, Patricia Ribeiro
How to take part
Participants that wish to take part can contact the researcher via email at p.ribeiro@wlv.ac.uk
Once participants have read the Participation Information Sheet and have given their consent, they will then attend a one-to-one interview via Microsoft Teams with the researcher.
The interview will last approximately 30-60 minutes and will be audio recorded only.
During the interview you will be asked questions about the support and help you provide to your relative, and the impact that available symptom management information and knowledge has on your mental health and wellbeing.
Study will close 18 July.
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
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
Research news highlights
uniQure
uniQure's gene therapy, AMT-130 appears to slow down signs of Huntington’s disease in Phase I/II clinical trial
Skyhawk Therapeutics
Positive news from Skyhawk Therapeutics' Phase 1 trial for SKY-0515
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