Huntington's Disease Research

University of Melbourne Huntington's Disease Research Group

The University of Melbourne Huntington’s Disease Research Group was established by Emeritus Professor Edmond Chiu in 1989. The team, led by Dr Anita Goh, is active in conducting national and international research into improving the quality of life of families affected by HD.

Our research studies focus on:

  • potential genetic discrimination against those affected by HD, and the possibility of enacting law reform to address this discrimination in Victoria.
  • behavioural and psychological symptoms of HD
  • international collaborative prospective HD research to monitor how the disease appears and changes over time in different people.
  • clinical trials with new medications or lifestyle interventions.

Our group aims to support the HD community through research and knowledge translation, and through a focus on personal communication and a genuine interest in families with HD.

For all HD research-related inquiries, please contact Stephanie Perin via phone (03) 8387 2418 or email.

The Enroll-HD Study

Enroll HD

The University of Melbourne’s Huntington Disease research group is now recruiting for participants for the Enroll-HD study.

Enroll-HD is a worldwide observational study for Huntington’s disease families. The aim of Enroll-HD is to closely track how HD emerges and changes over time, rather than test a specific treatment. Visits take place once-yearly at the Royal Melbourne Hospital in Parkville, Melbourne, and take about 90 minutes. We ask questions about your history and health, complete some memory and thinking tasks, and a blood test. For more detailed information, please click here.

For further information, or to inquire about participating in Enroll-HD, please contact Stephanie Perin via email or phone: 03 8387 2483.

University of Melbourne HD Research Participant Registry

The University of Melbourne's Huntington's Disease (HD) research group, led by Dr Anita Goh, is part of the Academic Unit for Psychiatry of Old Age. The HD research group conducts a range of research projects with volunteers with HD, including: observational studies on the symptomatic changes, nature, and progression of HD, trials of new investigational drugs, and research on the psychological and social impacts of HD.

Our HD Research clinic aims to:

  • Further the knowledge and understanding of Huntington’s Disease
  • Give the HD community opportunities to participate in local and international research
  • Actively continue advocacy and research in the HD community

Dr Anita Goh and the research team are now inviting individuals to take part in HD research at the University of Melbourne by signing up for our participant registry. We are looking for individuals who have HD or who have a family history of HD, including those who have not completed genetic testing. Signing up to our participant registry will enable you to be contacted about upcoming HD research studies, and kept up to date with HD Research news from the University of Melbourne.

For more information, or to sign up to the registry, please contact Stephanie Perin by phone: (03) 8387 2483 or email.