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
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
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, Greater London, West Yorkshire, Tyne and Wear
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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
Adapted Cognitive Behavioural Therapy (CBT) for patients living with neurodegenerative disorders
about the study
This study will investigate the effect of a new psychological intervention for people living with neurodegenerative conditions on mood and well-being. Participants will be able to take part in one-to-one psychotherapy-based sessions, a type of talking therapy, to address low mood and worries, which has been adapted for neurodegenerative conditions.
What does it involve
This will be conducted with a researcher supervised by a clinical psychologist who has a strong background in neurodegenerative conditions. Participants can fill out questionnaires online. Psychotherapy sessions will be carried out online using Microsoft Teams.
Who can take part
- You are in the early stages of Huntington’s disease (at risk, pre-symptomatic or symptomatic)
- You do not currently have any active involvement in a psychological intervention, or have not received psychological intervention in the past six months.
- You are either not taking any medication or are on a stable medication regime (for movement and/or mood), with no changes anticipated in the next 12 weeks.
- You would like psychological support
- You can understand and speak English for communication with the researcher, and are able to understand this information sheet and decide for yourself if you would like to participate in this study
- You have access to a computer, tablet or phone with access to the internet, or are able to arrange to meet the researcher
- You are over the age of 18 years.
How to get involved
This study will close on 31 July
A reflexive thematic analysis of the experiences of partners of people with pre-symptomatic Huntington’s disease
About the study
The purpose of this study is to explore the experiences of partners/spouses of people with pre-symptomatic (before motor symptoms have started) Huntington’s disease. This is where they have had a positive gene test for Huntington’s disease, but symptoms have not yet started. This study is to help to understand more about how couples navigate their relationship around Huntington’s disease and to discover what are the impacts of Huntington’s disease on the family from the perspective of non-affected partners.
What does it involve?
This will be done via semi-structured interviews that will last approximately an hour, with five to ten minutes on either side for a brief (including gathering consent to participate) and a debrief.
Who can take part?
- Have a partner who is in the pre-manifest stage of Huntington's and has known about their status for at least six months
- Been in a relationship with their partner for at least 6 months
- Be in the UK
- Be able to speak English fluently enough to participate without the need of an interpreter
- Be 18 years old or older
How to get involved
This study will close on 1 August.
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.