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.
Promoting and supporting participation and social connectedness for people with progressive neurological conditions to reduce loneliness and isolation
Cardiff University
About the study
Progressive neurological conditions, such as Parkinson’s, Huntington’s, and multiple sclerosis, present significant challenges to individuals' social participation and overall quality of life. These conditions often lead to physical, cognitive, and emotional barriers, contributing to social isolation and a decline in mental well-being. Current literature highlights the importance of community and social engagement in mitigating these effects, yet there is a lack of comprehensive understanding of how these opportunities are supported at different levels—social care, community, and individual.
Study aims
This study aims to fill this gap by exploring the existing support systems and barriers to participation for people with progressive neurological conditions across Wales. This aim is proposed to be fulfilled via survey, with optional follow-up sessions in the form of interviews with individuals that are living with a progressive neurological condition and social care practitioners and focus groups with third sector community groups.
Who can take part
Participants will be recruited from three groups:
Individuals with progressive neurological conditions
- Participants must be 18 years or older
- Be from Wales
- Gene positive for Huntington's disease
- Must have capacity to provide informed consent
Social care practitioners
How to take part
- Must be currently employed or recently employed (within the last 12 months) as a social care practitioner in Wales
- Must have experience working with adults diagnosed with progressive neurological conditions (e.g., Huntington’s, Parkinson’s, Dementia, Alzheimer's, Multiple Sclerosis, Ataxia, Dystonia, Motor Neuron Disease)
- Must be representatives from third sector organisations, community groups, peer support groups, or similar entities that operate within Wales
- Organisations must provide support or services to individuals with progressive neurological conditions (e.g., Huntington’s, Parkinson’s, dementia, Alzheimer’s, Multiple Sclerosis, Ataxia, Dystonia, Motor Neuron Disease)
- Participants must be in a role within the organisation that involves direct interaction with, or decision-making about, support services for individuals with progressive neurological conditions
How to take part
Study will closes 31 May.
People at risk of Huntington's
This study is conducted by Prime HCD, in collaboration with the European Huntington Association and sponsored by uniQure. It aims to raise awareness of pre-motor manifest (before motor symptoms) Huntington’s disease and improve care for those in the early stages of the condition. Your input is valuable in helping us better understand the needs and challenges faced by Huntington’s disease gene expansion carriers and those at risk.
What does it involve
An online survey about Huntington’s disease gene expansion and those at risk. The survey, which will take around 20-30 minutes, asks questions about your experiences, resource usage, and unmet needs.
As a thank you for your time, Prime HCD will donate £60 for each completed survey to the Huntington’s Disease Association.
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
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
This study will close 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
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
This study closes on 1 September 2025.
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
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
Read the article
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