Huntington's Disease Mapping Registry Established

People in Australia affected by Huntington’s Disease – a rare familial neurodegenerative condition – are being invited to take part in a national mapping program to improve understanding and enhance treatment options. The program is called the Map-HD Registry.

Huntington’s disease (HD) affects people’s thinking abilities, movement, and mood. HD typically commences in a person’s midlife and progresses slowly over more than a decade. Currently, treatments are available for some of the symptoms of HD. No treatments are available to slow progression.

Monash University Turner Institute for Brain and Mental Health researcher Professor Julie Stout said the mapping program will work toward ensuring that health services targeted at people with HD are delivered more efficiently and equitably.

“By knowing where in Australia people with HD are living, we can help direct the care and resources to the right regions and cities,” Professor Stout said.

“Even in large cities, wait lists for treatment are often long and the availability of services is uneven.

“By understanding how easy or difficult it is for someone with HD to receive specialised care, we can work to improve access to services.”

The Map-HD Registry is aiming to connect with people in Australia who are affected by HD including:

  • People who already have HD symptoms
  • People from an HD family, even if they do not carry the HD-causing gene mutation
  • People who are carers of people with HD

Professor Stout said data collected by the Map-HD Registry would also be shared with State and Commonwealth governments to inform decisions about where resources should be located, and what resources are needed.

“The registry will show where HD support and clinical services are best placed, increase the efficiency of HD research, connect people with research and clinical trial opportunities and generate new knowledge to inform the development of new treatments,” Professor Stout said.

The Map-HD Registry is being led by the Huntington’s Disease Network of Australia (HDNA), which is a group of clinicians, HD state association staff, HD support workers, and people whose lives are affected by HD in themselves or their family members.

Visit hdna.com.au to find out more and to sign up to the Map-HD Registry.