For Study Sites and Staff

This part  of the website is for the Enroll-HD study site staff to find the information they need, recruit participants, and get the latest news on the study’s operations and progress.

Most of the standard operating procedures and documents can be found in the operations manual on the EDC (Electronic Data Capture) system that is used to manage study data (login required).

This page explains how  to join the study if your site is not currently part of Enroll-HD.

Although Enroll-HD is designed to be conducted in the same way in every nation and in more than a dozen languages, each study site is unique, with its own culture, its own history and its own way of engaging with the community. The energy and hard work of the study sites is what makes Enroll-HD possible.

Learn about other sites through the Enroll! newsletter

In the Enroll! newsletter we profile study sites and their staff to help everyone around the world working on Enroll-HD get to know one another. We explored the HD center at the Columbia University Medical Center in New York City, which was for a time the highest-recruiting site for the study, to find out their secrets. The staff at Columbia has relationships with HD families that go back for decades.

Check back here for more introductions to other sites and staff around the world, and find out how other sites and other coordinators manage Enroll-HD.