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.
Vignettes for Change: Co-designing real-life scenarios to improve Huntington's disease care worldwide
Edith Cowan University
About the study:
This international study involves developing short real-life stories (vignettes) based on the experiences of people living with Huntington’s disease and their primary caregivers.
These stories will help to improve care and raise awareness of the challenges faced by the Huntington’s community, and help healthcare professionals and decision-makers improve care practices around the world.
Who can take part:
- Adults aged 18 and over
How to get involved:
Please contact the researchers, Dr Travis Cruickshank at t.cruickshank@ecu.edu.au and Alex Fisher at Alexandra.fisher@nhs.net if you would like to get involved.
Participants will be asked to complete a 60-minute interview (with breaks if needed) either online or via the telephone. With your permission, this will be recorded.
The interviewers would like to discuss:
- Changes you have noticed
- Your day-to-day activities
- Where and with whom you live
- Basics like water, electricity, and food
- Money and transport
- Who helps you
- Your contact with health or social services
Participants will be able to pause, skip questions, or stop the interview at any time, and a family member or friend can join if you would like.
Participants will also be invited to a short 20-30 minute follow-up to check that the story given is accurate.
Study is open until 01 June 2026.
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.
Exploring the experiences of people with a family history of genetic conditions in obtaining insurance
University Hospitals Southampton NHS Foundation Trust
About the study:
Despite the 'Code on Genetic Testing and Insurance' and the moratorium, some individuals struggle to obtain insurance when there is a genetic condition in their family. There is a lack of published research in this cohort of individuals. The last published research in the UK was in 1998, nearly 30 years ago, when the landscape of clinical genetics was very different, with limited genetic testing available.
This study hopes to gather information about people's experiences regarding obtaining insurance, so that researchers can better understand whether having a genetic condition in the family affects individuals when they try to obtain insurance.
Who can take part:
- Adults aged 18 and over
- Adults who have a genetic condition or genetic change in their family
- Adults who have life insurance, or have tried to obtain life insurance
How to get involved:
Please contact the researcher, Luc Van Rensburg, at Luc.VanRensburg@uhs.nhs.uk if you would like to get involved.
Participants will be asked to fill out an online survey which will ask questions about the genetic condition in your family, your health, and your experiences in obtaining insurance.
Study is open until 28 February 2026.
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
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Positive news from Skyhawk Therapeutics' Phase 1 trial for SKY-0515
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