Enroll-HD is 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. It fosters collaboration among all these stakeholders to work towards a better understanding of HD and accelerate the development of new, effective treatments.
The study is a clinical research platform that will support a multitude of other clinical activities:
- 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 the pathophysiology of HD
- informing clinical decision-making and defining clinical best practices for HD
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 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 database of individuals who may be interested in volunteering for future studies, including drug trials, with run-in data that characterizes them and their disease.
If you’d like to work with the data and biosamples from this study, please click here for a description of the available resources.