Enroll-HD is a brand new worldwide observational study which has now taken over from the REGISTRY study which has recently closed to recruitment.
Enroll-HD is a study which aims to accelerate the development of therapies for HD by collecting more uniform clinical data and biological samples to better understand the natural history of HD. The study will build a comprehensive and extremely valuable database of information which will be available for use by HD researchers worldwide. “Enroll-HD will also be used for identifying which volunteers may be suitable for forthcoming treatment trials.”
For more information about the differences between Enroll-HD and REGISTRY this article on HDBuzz provides a more detailed overview.
Who can take part?
Any member of a family affected by HD 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 HD but know they do not carry the expanded gene
- Spouses/partners (not blood-related) of family members with HD
Children under the age of 18 with clinically diagnosed juvenile HD 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).