The HDNA aims to determine the best models of care for HD in Australia.
We need to understand the unmet needs of families managing HD. At the same time, we need to understand the capacity of the care and support available. Only then can we outline how to best support an excellent quality of life for these families.
Once the best models of care are known, the state-based HD clinicians and community organisations will have the information they need to implement these models of care into their local health systems.
What is a model of care for HD?
A model of care sets the standard and defines the best clinical care and support for people with HD.
Why do we need a model of care for HD?
Not everyone has access to care by clinicians and support workers who have expertise in HD.
There are not enough HD specialists in Australia. At present, Australia has no more than 7 or 8 specialist HD clinics. More people need specialist training to care for the HD community. A model of care will identify the type of training needed and how many people need to complete it.
Many people affected by HD live far from specialist facilities. Australia is a large continent with the population spread across it. Vast distances make it difficult for people to access face-to-face HD care on a routine basis.