Enroll HD – Westmead site

Westmead Hospital

Contact: Therese Alting 8890 6310 or 0438 604 719

A worldwide observational study for Huntington’s Disease families

Enroll-HD is a worldwide observational study for Huntington’s disease families. It will monitor how the disease appears and changes over time in different people, and is open to people who either have HD or are at-risk. Enroll-HD is up and running for HD families in North America, Europe, Latin America, Australia, New Zealand and some countries in Asia. It will eventually include more than 20,000 people. Monitoring people over time in a real-world setting contributes to scientific knowledge. The study is designed to accelerate the discovery and development of new therapeutics for HD. The study builds upon and unites two successful studies: COHORT in North America and Australia, and REGISTRY in Europe.

In addition to providing multi-disciplinary care to the NSW Huntington’s community, the service has been involved in local and major international research studies since its establishment at Westmead Hospital in 1995. Hundreds of volunteers have generously participated in research to better understand the disease and in the search for effective treatments.

Who do I contact in NSW to find out about Enroll?

The Study Coordinator is Therese Alting. For more information please phone 8890 6310 or 0438 604 719 (Mondays and Thursdays).

This services is provided in a variety of settings including the patient’s private home, boarding house, nursing home or hostel and Outpatients Department.