Enroll-HD: A Public Resource

One way that Enroll-HD is unique is that it is  designed to be a public resource shared by the whole  HD research community.

Most studies are restricted,  so that only the researchers who collect the information can get access to it to learn about the disease. Enroll-HD uses high standards to protect the privacy  of participants, so that anyone with a valid research  project can get access to data with all  potentially identifying information removed.

The work  of granting permission falls to the Scientific Publication Review Committee, which is now developing ways to connect with researchers. The committee also will  review suggestions to collect new types of information that Enroll-HD currently doesn’t ask about. Data from Enroll-HD should become available for researchers some time in 2015.