Estimates of how many people are currently living with Huntington’s Disease (HD) differs greatly from one country to the next. Within Australia, the prevalence of HD is still largely unknown. In Australia, estimates even differ between each state and territory, or even within regions. Understanding how many people are affected by HD and where they live, will help us to provide people with access to the necessary information and support.
HDNA is conducting a prevalence study to determine how many people in Australia are affected by HD. This includes people that have HD or have the gene for HD even if they are not showing signs. We are also interested in people from HD families, regardless of whether they have had the genetic test or not, and regardless of whether they are at risk by birth.
The HDNA wants to know where people affected by HD live, and if they live in urban, regional, or remote areas, because where people live affects what services are available to them. The findings from the HDNA prevalence study are expected to improve current understanding of the incidence and prevalence of HD in Australia, will be useful in supporting the approval of drugs in Australia, and in getting government funding for treatments. This is one of the most pressing reasons for us to understand the prevalence and distribution of HD in Australia.
The prevalence study will also help to support the development of a national HD registry [insert link to HD registry]. By connecting the community, local and state health services, this ultimately contributes to facilitation of support to improve quality of life for patients and for the people who support them.
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