Research
Enroll-HD is a clinical research platform and the world’s largest observational study for Huntington’s disease families. By monitoring how the disease happens in people and how it changes over time in very fine detail with the same tests and assessments around the world, researchers can use the huge data and biosample collection to learn more and come up with new ways to effectively treat HD. It is a resource for the entire HD community, including families, clinicians, researchers, advocates, and anyone else who has a connection to or an interest in HD.
Therese Alting, Study Coordinator
Email: therese.alting@health.nsw.gov.au
Phone: (02) 8890 6310 or 0438 604 719
The Huntington Study Group (HSG) is the world’s first HD cooperative therapeutic research organization. Today, HSG is a world leader in facilitating high quality clinical research trials and studies that bring us closer to finding more effective treatments for HD and reducing the burden of HD for families affected by the disease.
HSG is an organisation of compassionate professionals dedicated to finding treatments that make a difference, providing rigorous care initiatives, and improving the quality of life and outcomes for HD families. They bring together families, medical professionals, clinical researchers, HD advocacy groups, and sponsors to raise awareness of HD, share knowledge and best practices, and develop innovative treatments.
HDBuzz is a collaboration of clinicians and scientists who write high-quality Huntington’s disease (HD) research news to the global community, written in plain language. It covers laboratory and clinical research, with the aim of helping HD people to understand the latest HD science, on their own terms. They have allowed us to retrieve their articles for the Huntington’s Australia community.
The Huntington’s Disease Network of Australia (HDNA) was formed in 2020 to coordinate efforts that enhance care and services for HD and prepare for the advent of new HD treatments. The Map-HD Registry is for people in Australia who are affected by HD. All family members or people affected by HD are encouraged to register, whether or not they are at risk themselves.
Huntington’s Australia places a high priority on research into Huntington’s disease and through a bequest we are able to offer small grants for research projects. Learn more about our research grants.
