Ed Wild

How our families can get involved

There are many research studies currently under way offering opportunities for families and individuals to get involved as research participants. Below you will find information about specific studies and websites where you can explore new opportunities.

If you are interested to know more about what it is like to take part in research, see ‘What our researchers and families say’. You can also ask your HD Specialist for specific information and advice.

Taking part in research is always voluntary and it will have no impact on the services or support you receive from Scottish Huntington's Association.

Current studies that are recruiting in Scotland include:

Enroll HD

A collaboration between Huntington’s disease families, clinicians, and researchers to accelerate progress toward effective treatments.

HD Clarity

A multi-site cerebrospinal fluid collection initiative to facilitate therapeutic development for Huntington’s disease.

Proof HD

A clinical trial of the drug pridopidine.

To register your interest in getting involved with studies into neuroprogressive disease and dementias, follow the link below.

https://www.nhsresearchscotland.org.uk/research-areas/dementia-and-neurodegenerative-disease/get-involved

The European Huntington’s Disease Network provides a useful portal to find out more about opportunities to take part in research – follow the link below and check out the section about ‘HD Research’.

https://ehdn.org/hd-patients-families/#hd

You can also find out more at HD Trial Finder

University Research

The University of Reading is studying the mental health and wellbeing of people living with neurodegenerative conditions such as Huntington’s disease.

It is looking to speak to people who are living with Huntington’s (symptomatic or not) and have tried (any form of) psychological therapy.

Contact (Dr Greig Adams) at g.r.adams@reading.ac.uk if you would like to know more about taking part in this interview study or if you have any questions about your eligibility to participate. 

 

Cardiff University is investigating the experiences of people who grew up with a parent impacted by Huntington’s disease.

The study aims to explore how this may have influenced feelings and perceptions of genetic testing, marriage/relationships, education and having children.

For more information about this project or to volunteer to take part in the study please contact Elena Owens, MSc student in Genetic and Genomic Counselling, at Owense5@cardiff.ac.uk