Participating in Enroll-HD - Becky's story
Community stories, Research and studies
Enroll-HD is a study that aims to accelerate the development of therapies for Huntington's disease by collecting more uniform clinical data and biological samples to better understand the natural history of Huntington's.
About the study
The study will build a comprehensive and extremely valuable database of information that will be available for use by Huntington's researchers worldwide. Enroll-HD will also be used for identifying which volunteers may be suitable for forthcoming treatment trials.
Who can take part?
Any member of a family affected by Huntington's disease can take part*. This includes:
- Individuals who know they carry the expanded gene, whether or not they show signs and symptoms of the disease
- Individuals who are at risk of developing the disease (but have not undergone genetic testing)
- Individuals who have a family history of Huntington's but know they do not carry the expanded gene
- Spouses/partners (not blood-related) of family members with Huntington's
Children under the age of 18 with clinically diagnosed Juvenile Huntington’s disease may be included in this study with the consent of a parent or legal guardian.
(* there are some restrictions based on medications being taken, your Enroll-HD site can advise further).
What does it involve?
If you decide that you want to join Enroll-HD, you’ll make an appointment to visit your local study site. Your Enroll-HD study visits will be a little bit like a regular visit to a Huntington's disease clinic, but different in some important ways. The main difference is that instead of being a patient you’re now a study participant, which means that you are providing information rather than getting counselled about your health.
The time your visits take will differ slightly depending on your local site. Your first visit may take between on and a half and two and a half hours, and follow-up visits may be less than an hour or up to two hours. At some larger sites that also provide regular medical care for Huntington's disease, it may be possible to schedule your regular clinic visit and your Enroll-HD visit for the same day.
At each study visit, you’ll meet with a neurologist or other healthcare professional to answer questions and complete a series of evaluations.
How do I get involved?
You will need to get in touch with your nearest Enroll-HD site.
Find out exactly what happens when you join Enroll-HD
