Enroll-HD is a clinical research platform and the world’s largest observational study for Huntington’s disease families. It is a resource for the entire HD community, including patients, families, patient advocates, clinicians, researchers, and anyone else who has a connection to or an interest in HD. Enroll-HD fosters collaboration among all these stakeholders to work towards a better understanding of HD and accelerate the development of new, effective treatments.
As a clinical research platform, Enroll-HD supports a multitude of other clinical activities, including:
- the design and conduct of clinical research studies and interventional trials, including the development of novel assessment tools, clinical endpoints, and biomarkers.
- studies aimed at better understanding HD pathophysiology.
- informing clinical decision making and defining best clinical practice for HD.
Enroll-HD helps 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 gives the study more power to better understand the pathophysiology of HD.
- making data available to researchers who want to better understand HD; the aim is to have as many researchers as possible worldwide working on HD.
- developing a comprehensive coded database of individuals who may be interested in volunteering for future studies, including interventional trials, with run-in data characterizing them and their disease.
Available tools on this website:
Explore Data & Biosamples – description of all available clinical datasets and biosamples
Access Data & Biosamples – how to create an account and request data/biosamples
Data Support Documentation – general study documents, including study protocols, data dictionaries, data/biosample use agreements, and data/biosample request forms
Publications – publication policy, authorship guidelines, acknowledgment language, and bibliography of publications that use Enroll-HD data
Data & Biosamples Projects– running list of researchers who have downloaded Enroll-HD and/or other datasets, with concise project descriptions
Analyzing Data– short video and series of instructive articles providing guidance on analyzing data from Enroll-HD and other observational HD studies