Observational Studies

These studies collect information so scientists can better understand HD, its causes, effects, and influences. The data supports clinical research that aims to find treatment and/or a cure. There is no intervention or treatment in observational research.

Ongoing observational studies for Huntington’s disease include Enroll-HD, HDClarity, ChANGE-HD, and JoHD. These studies are always enrolling, so you may join at any time. They are open to everyone with HD in their family, with some studies focused on different age groups. This includes people who are at-risk for HD, who are gene positive and not yet symptomatic, who are living with the disease, and who are gene negative.