Enroll-HD - A Prospective Registry Study in a Global HD Cohort

Link to other Enroll-HD webportals

Link to the study portal for data-entry
For sites staff: EDC study portal

Link to the public webportal for global information and the data set download
Enroll-HD webportal

A worldwide observational study for Huntington’s disease families

Enroll-HD is now up and running and accepting participants in the United States, Canada, and Argentina! The first participant joined Enroll-HD on July 26th 2012 at the University of Tennessee Health Science Center, and already there are 793 participants as of June 26th 2013. Keep up to date with the latest developments through the newsletter, Enroll! – new issues will be posted here on this site.

Click here for clinical sites currently recruiting participants
Click here for the Enroll-HD Scientific Strategy Plan

Enroll-HD Newsletter and Monthly Bulletin

Enroll! is a quarterly newsletter for research participants and site staff to catch the latest news about Enroll-HD progress around the world. Read more
A new Enroll-HD website that features much more information for participants, site staff, researchers and clinicians is currently under development, please check back frequently. Read more

What is Enroll-HD?

  1. Enroll-HD is a global longitudinal, observational study of Huntington’s disease
  2. Enroll-HD collects a common set of data for all participants across all sites around the world
  3. Enroll-HD also collects blood samples for DNA and cell lines
  4. All data and samples will be available to share with researchers to answer important questions about HD

Enroll-HD will help the research community by:
  • Providing clinical data and biologic samples to help better understand the human biology of Huntington’s disease – there is still a lot we don’t know
  • Determining what interventions work to improve the care of people with HD
  • Developing better, smarter clinical trials
  • Promoting the recruitment of clinical trial participants

FIRST 500 Participants!
On April 4, 2013 sites in North America enrolled the first 500 Participants into Enroll-HD. Since we first announced Enroll-HD in November 2010 we have made great progress in establishing this important research platform for HD research.

Enroll-HD Goals
On March 15th, the Enroll-HD Steering Committee agreed to the following priorities for Enroll-HD:
  1. Enable clinical research
  2. Better understand Huntington's disease
  3. Improve clinical care


To add information about your study site to the Global Site & Investigator Feasibility Questionnaire on Huntington's Disease please visit the GSID website