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

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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

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Social cognition and quality of life in Huntington’s

Birmingham and Solihull Mental Health NHS Foundation Trust

About the study:

Previous research has shown that Huntington’s disease can affect social cognition. These changes can make it difficult to respond to emotions and can make social interactions feel confusing or overwhelming.

This new study aims to explore how changes in social cognition relate to everyday quality of life for both people with Huntington’s disease and those close to them, and how well the tests used to measure social thinking link to real-life experiences.

The study includes people with Huntington’s disease and their close others (carers, partners, friends, or family members). This will allow researchers to understand day-to-day life and compare experiences against the account given by the person with Huntington’s disease.

 

Who can take part:

• Patients who are displaying early signs of Huntington’s disease
• Those who are moderately symptomatic in terms of movement and cognitive problems

 

Who cannot take part:

• Those who have received a positive genetic test for Huntington’s disease in the last 6 months
• Those who are currently undergoing genetic counselling
• Those with other significant mental health problems (e.g. a recent suicide attempt or section); issues that would preclude task completion (e.g. significant disorientation / dementia)
• Those with an autistic spectrum disorder diagnosis (as researchers wouldn’t know if the problems with social cognition were due to this or Huntington’s).

 

How to get involved:

This study has two parts, both of which will take approximately 60 – 90 minutes to complete. Each part includes several questionnaires that you can complete in your own time. Participants will also complete cognitive tasks with the researcher either online or in person.

Both parts will examine social cognition, relationships, quality of life, and other symptoms that people with Huntington’s disease may experience, such as difficulties with movement, memory, and / or low mood.

If you are taking part as a close other, you will complete most of the same measures, except for those specifically about Huntington’s disease symptoms. You will be asked instead to fill in a few extra questionnaires about the person with Huntington’s disease. and about your experiences as a carer.

To get involved, please contact the researchers, Dr Clare Eddy and Anika Miah, on anika.miah1@nhs.net

 

 Up to £60 in Amazon Vouchers depending on extent of completion.

Recruitment information 

Study is open from 01 January until 30 April 2026

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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.

Recruitment information

Study is open until 28 February 2026

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Reducing inequalities across the care pathway for minority ethnic communities

University of Bradford

 

About the study:

Research shows that Black and South Asian people living with neurodegenerative conditions and carers often face extra challenges when seeking a diagnosis for conditions like Dementia, Parkinson’s disease, Motor Neurone Disease, or Huntington’s disease. These challenges can include language barriers, cultural misunderstandings, and a lack of tailored support.

The experiences of people living with Huntington's disease matter. By taking part in this study, they can help us understand how a diagnosis can be made more accessible, respectful, and supportive for Black and South Asian families.

This study is being carried out on behalf of the NIHR Policy Research Unit in Dementia and Neurodegeneration at the University of Exeter (DeNPRU Exeter), in collaboration with the University of Bradford. This study is funded by the National Institute for Health and Care Research (NIHR).

Who can take part:

• People from Black or South Asian backgrounds living with Huntington's disease
• Huntington’s carers from Black or South Asian backgrounds
• Healthcare professionals of any background

How to get involved:

If you would like to get involved, please contact the researcher, Gary, on g.fry@bradford.ac.uk

Participants will then be emailed an information sheet and a consent form to sign and return by email.

Participation in the study will involve a 30 – 60 minute interview via Microsoft Teams, and information provided during this interview will be incorporated into the study. Interviewees will be offered a copy of the research findings, which will also draw on other interviews with people living with neurological conditions, their carers, and healthcare professionals involved in supporting them.

People living with Huntington's disease or their carers will receive a £25 gift voucher once the interview has taken place; there is no incentive for healthcare professionals.

 

Study is open until 31 January 2026

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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

If you are interested, please complete the survey

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