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.
Exploring how people with premanifest Huntington’s disease have adapted their psychological self-care
Bangor University
About the study:
We want to understand how individuals in the premanifest stage of Huntington’s disease care for their psychological wellbeing, both before receiving a genetic diagnosis and in the time since.
As this research aims to deepen our understanding of the experiences and needs of individuals in this position, we’re also interested in learning about the support that would be most beneficial to those in this position.
Who can take part:
- Adults aged 18 and over
- Adults based in the United Kingdom or Ireland
- Adults who have a genetic diagnosis of Huntington’s disease, but do not yet experience symptoms
*You do not need to have received any support / treatment from professional services to participate.
How to get involved:
If you would like to take part, please contact the researcher, Niamh Duffy, at nmd23lfd@bangor.ac.uk
Niamh will then send on a leaflet with further information and a short online questionnaire.
Participants will then be required to sign a consent form and participate in an hour-long interview over the telephone or via Microsoft Teams. Information given will then be collated into a story, which the interviewee will be able to read and provide feedback on before it is included in the research.
You will receive a £20 Amazon voucher as a thank you for your participation.
Study is open until 04 May 2026.
A national evaluation of person-centred physiotherapy practice in the context of Huntington's Disease - A mixed methods study
Edinburgh Napier University
About the study
This mixed-methods study will examine experiences of person-centred physiotherapy from clinicians, people with Huntington’s, and their carers. It will explore how current physiotherapy aligns with person-centred practice, offering an overview of the therapeutic landscape for Huntington’s disease.
A key focus is physiotherapists’ knowledge, confidence, and ability to deliver person-centred care, assessed using the Person-Centred Practice Inventory – Staff (PCPI-S).
Findings are expected to:
- Highlight strengths and gaps in current practice
- Inform improvements in physiotherapy for Huntington’s disease in the UK
- Provide students with valuable insights and skills.
Who can take part:
Participants must:
- Be over 18
- Have experienced physiotherapy
- Be carers who have been part of the physiotherapy process.
How to get involved:
Participants will:
- Complete a brief online survey about your current practices and views on person-centred care. This will take approximately 15-20 minutes to complete.
AND / OR
- Complete an online or in-person (the choice is yours) 30-minute interview discussing your experiences in more depth.
Participation is entirely voluntary, and you can withdraw at any time.
All information collected will be kept strictly confidential and used solely for research purposes.
If you have any questions or would like further information, please email Lorraine at l.barry2@napier.ac.uk
Study closes 28 November 2025
The experiences of bereaved family members of someone with Huntington’s disease who are currently receiving end of life care or had received end-of-life care and died in a nursing or care home.
University of Leicester
About the study
This study hopes to hear and record the reflections of families on this important time in their lives, and that of their family member(s). It aims to recognise valuable themes that will add to the small body of knowledge that already exists on this subject and improve the quality of end-of-life care for families and people with Huntington’s disease in the future.
Who can take part
- People over 18 years of age
- People who may have been looking after someone at home who then went into a nursing or care home, and is currently receiving end of life care or has died in that setting.
- Close family member(s) of someone who was supported in their own home, who then went into a nursing or care home, and is receiving end of life care, or has died in that setting.
- Close family member(s) of someone who has been receiving care in a nursing home but has been admitted to hospital and is now receiving end of life care in that setting, or someone who was admitted to hospital where they later died.
What does it involve
This study is looking for 15 participants to take part in an interview with the researcher. This can take place in person, online via teams, or by email if preferred.
Once recruited, participants will receive a £25 gift voucher.
How to take part
Please email Catherine on cl527@leicester.ac.uk
Study closes 26 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
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
Read the article
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