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.
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
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? Are you interested in contributing to research? 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.
How to get involved
This study closes on 1 September.
Understanding individual experiences of receiving a diagnosis of Huntington’s disease in people with no known family history
University of Birmingham
About the study
We are interested in the experience of being diagnosed with Huntington’s disease in people who have no known family history of Huntington's. This project aims to explore aspects such as what the process was like and how it made you feel.
Study aims
The aim is to use this understanding to highlight clinical practices which could impact the wellbeing of people living with Hutington's disease. They want to raise awareness of Huntington’s disease, and provide a forum for people to share their living experiences and personal sense-making of being diagnosed through this pathway. This might include the impact on sense of self, perception of adjustment and experience of community response. Furthermore, to highlight helpful and unhelpful clinical practices which could impact the wellbeing of people living with Huntington’s disease.
Who can take part
- Over the age of 18
- Diagnosed with Huntington’s disease (not through predictive genetic testing)
- Participants must have capacity to consent and means to communicate independently with minor reasonable adjustments, such as increased interview time and various modes of information sharing (written, shorter chunks).
What does it involve
In person or online 90-minute interview.
Individuals will have the option to engage in the interview with a companion present. Adjustments to ensure equity of access for those with progressive symptoms will be implemented, such as additional time and prior shared written questions for those with slowed processing, perseveration of speech and dysarthria.
How to take part
Study closes 31 March 2025
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 on 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 HD 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 HD 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.
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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