So what exactly is Enroll-HD? Enroll-HD is a worldwide observational study for Huntington’s disease families. In an observational study, investigators assess health outcomes in groups of participants according to a research plan or protocol. But Enroll-HD is much more than just a joining of study participants and researchers. Enroll-HD has the opportunity to change how we look at HD, and show how the disease appears and changes over time. Enroll-HD will also eventually include almost 20,000 participants from North America, Europe, Latin America, New Zealand, and some countries in Asia. That makes Enroll-HD a huge study, the focus of which was today’s Enroll-HD Site Investigator Meeting at the first day of HSG 2015 in Tampa, FL.
What should some of the key takeaways be from today’s meeting? For starters, recruitment should still be a key part of the overall study “strategy.” The more participants in the study, the more data that can be collected on the disease itself. During the afternoon panel session with Joe Giuliano, Jody Corey-Bloom, Mark Guttman, Bernhard Landwehrmeyer, Martha Nance, and Francis Walker, the participant experience was a hot topic in an open forum discussion. Of interest was the discussion how some HD families were participating in the trials and their motivation for doing so. Some researchers reported that participants in Enroll-HD at their clinical sites like being in the study because it helped them feel as though they were contributing to a cure. Other researchers mentioned that for some people, the once-yearly study visit was a chance for a check up with their doctor to see how their disease was progressing. And for some participants, it was the only way they would get to see a Huntington’s disease specialist.
Why should this be important to the HD community? Let’s be honest, Huntington’s disease is a family affair. Did you hear the chorus of the popular 1971 song of the same name by Sly and the Family Stone? All jokes aside, the fact that HD is a family disease and that Enroll-HD is a study on HD families makes it an incredibly important and useful study that can help advance scientific knowledge on a very complex disease. Information about those who are at-risk of HD, and for those who are HD caregivers is also collected within Enroll-HD. Data collected within Enroll-HD can be shared across other HD-related studies and can help other researchers access volumes of data quickly and effectively.
How can you participate in Enroll-HD? The good news is, participation in the study is fairly easy. It requires a once yearly study visit at a study site, which you can find at the following website:
There are currently 7,696 participants in Enroll-HD. How can you help us get to 20,000 participants?
-Jared Husketh, contributor and director of clinical services for HD Reach