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.
Integrate-HD II
University of Southampton
The survey unveiled important questions in relation to integrated care in Huntington’s disease. This study aims to know more about the characteristics of care models in deemed areas of higher, lower and unknown integration, from the perspective of people living with Huntington’s disease, learning from what works well and what does not work well (and how to address those obstacles).
What does it involve?
The interview will take place over the phone or on Zoom for approximately one hour.
Who can take part?
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We want to interview adults living or caring for people in Hampshire, Shropshire and Warwickshire
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Living with Huntington's disease: someone at risk, gene positive, diagnosed with Huntington's disease, caring for someone, or a former caregiver of someone with Huntington's
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Staff caring for people with Huntington's disease: employed by NHS services, local authorities, voluntary sector, private sector, education, etc
How to get involved
Attitudes towards genetic testing and Huntington's disease
London Business School
The purpose of this research study is to understand people’s attitudes toward taking a predictive genetic test for Huntington’s disease and the psychological consequences of testing on an individual’s well-being. Specifically, we are interested in comparing the well-being of individuals who have versus have not taken a genetic test before developing Huntington's disease symptoms.
This study has been created by London Business School. They would like to donate £2 for each individual who completes the survey within one month to the Huntington’s Disease Association.
What does it involve?
This study is a 5–10 minute online survey which contains several questions that assess individuals’ psychological well-being. Participants will also be asked to answer these questions and report whether they have taken a genetic test and when they started developing Huntington's symptoms.
Who can take part?
You can get involved in the study if you fit the following criteria:
- Gene positive
- Early onset of symptoms
- Any age
How to get involved
Please contact Simona Botti or Selin Goksel.
How growing up in a Huntington's family affects social relationships (fully recruited)
Cardiff University
This study is looking to explore the experiences of children and young people growing up with a parent affected by Huntington's disease. The study will be looking to analyse interviews to find out how growing up with a parent with Huntington's disease affects social relationships, friendships, having children and thoughts on predictive genetic testing.
The study additionally aims to find ways to help children and young people growing up with a parent affected by Huntington's disease and find ways that may help healthcare professionals including genetic counsellors, to support children and young people.
What does it involve?
An interview will take place over Zoom.
It will take approximately 45-60 minutes.
Who can take part?
- Over the age of 18
- Live in the United Kingdom including England, Northern Ireland, Wales and Scotland
- Has grown up with a parent affected by Huntington's disease
- Can understand, read and speak English language
This study is no longer recruiting
Living with a long-term condition (fully recruited)
King's College London
We know that psychological distress (anxiety and depression) is common and experienced differently by people living with long-term health conditions. Being able to better measure and understand how people living with a long-term condition experience psychological distress would allow us to provide interventions specifically tailored to the challenges of living with a long-term condition and therefore provide the most appropriate support for these people.
What does it involve?
Participants will asked to do two short online surveys (15 minutes and five minutes), a week apart. The questionnaires will ask people about their mood and experience of living with a long-term health condition.
Who can take part?
- Based in the UK
- Over the age of 18
- Living with a diagnosis of Huntington's disease
This study is no longer recruiting
Want to hear about studies you can get involved in?