Enroll-HD is a worldwide observational study for Huntington’s disease families. It will monitor how the disease appears and changes over time in different people, and is open to people who either have HD or are at-risk.
Enroll-HD is or will soon be up and running for HD families in North America, Europe, Latin America, Australia, New Zealand and some countries in Asia. It will eventually include more than 20,000 people. Monitoring people over time in a real-world setting contributes to scientific knowledge. The study is designed to accelerate the discovery and development of new therapeutics for HD.
The study builds upon and unites two successful studies: COHORT in North America and Australia, and REGISTRY in Europe.
Enroll-HD will help accelerate research by:
- Collecting standardized data, in the same way and using the same methods, from tens of thousands of people around the world. More people undergoing the exact same evaluations means the study is more likely to uncover new things about HD.
- Making data available to any scientist with a legitimate research project who wants to better understand HD. We want as many scientists as possible all around the world working on HD.
- Developing a comprehensive database of people who may be interested in volunteering for future studies, including drug trials, with all the necessary information about them already in place.
Who can participate?
- People who know they carry the expanded gene, whether or not they have any symptoms related to HD or have officially been diagnosed with it.
- People who haven’t been tested to find out whether they carry the HD gene, but may be at risk based on family history. Even if you don’t want to know your gene status, you can still be part of Enroll-HD—you don’t have to find out.
- People who have a family history of HD but know they do not carry the expanded gene
- Spouses and partners (not blood relations) of people with a family history of HD
Children under the age of 18 with clinically diagnosed juvenile HD may participate with the consent of a parent or legal guardian.
How long will the study last?
Enroll-HD is an open-ended study, which means it has no end date. The longer you stay with it, the more valuable your contribution will be, but you can leave the study at any time you choose.
To stay informed about the Enroll study you can subscribe to the Enroll HD Newsletter here https://www.enroll-hd.org/newsletter-subscribe/.
Who do I contact in Western Australia to find out about Enroll?
The Principal Investigator for the Western Australian site is Professor Peter Panegryes. The local Study Coordinator is Dr Jacenta Abbott. You can contact Jacenta by phoning 08 9347 6464 or email Jacenta.Abbott@health.wa.gov.au.