The HDNA prevalence study will determine how many people in Australia have HD or are at risk for developing HD. The study will provide the most complete and current picture. To date, no single study has been able to count people affected by HD in Australia.

Knowing how many people are affected by HD means that we can:

  • Estimate the costs of HD to families. Costs in terms of lost time in employment and in family roles.
  • Determine costs of medical and disability services for HD.
  • Argue for government support of services, research, and new treatments.

The prevalence study will determine how many people in Australia:

  • have HD
  • have the gene for HD, and
  • are from HD families, regardless of whether they are genetically at risk

We want to know where people affected by HD live. Access to services differs across urban, regional, and remote areas.

The findings from the study should improve the understanding of the incidence and prevalence of HD in Australia. The data will support the approval of drugs in Australia and government funding for treatments.

The study will support the development of a national Map-HD Registry. The registry will link participants to their closest HD support services. The aim is to improve the quality of life for people affected by HD and those who support them.