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.
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
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.
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
Keep up to date with studies and research news