HD RESEARCH

Currently, there is no cure for HD. There are various drug treatments for some of the symptoms such as involuntary movements (chorea). 

Across the world, including in Australia, there is much research being done into HD. The ultimate goal is to find a treatment that substantially improves the symptoms or completely eradicates them. 

An example of a long-running international study is Enroll-HD. It began in 2012 and observes the progress of people with HD to enable better drug discovery and clinical trials. Many thousands of people across 21 countries are involved. To read about it, see https://enroll-HD.org

Scientists are optimistic that a useful treatment will be found. Proof of that optimism can be found in Australia, where Professor Julie Stout at Monash University has begun a large project funded by a National Health and Medical Research Council grant, to prepare the Australian Huntington’s community for accessing such treatment when available in future. The study also aims to develop an Australian model of care for people with HD and their community. 

A very useful website for reading about current research into HD across the world is HDBuzz at https://en.hdbuzz.net

In the meantime here is the exciting new initiative  mentioned above happening in Australia - the HDNA project run by Professor Julie Stout from Monash University.

Julie Stout is a professor in the Turner Institute for Brain and Mental Health and the School of Psychological Sciences at Monash University in Melbourne. She is an expert in measuring thinking and memory in neurodegenerative diseases such as Huntington’s disease, Alzheimer’s disease and Parkinson’s disease. Julie teaches university students about how the brain works in the context of our everyday thinking and behaviour. She conducts research aimed at understanding how changes in behaviour, such as thinking, moving, and mood, are affected as the brain and body change with dementia-causing diseases. Professor Stout has a PhD and was trained in the US as a clinical psychologist and a clinical neuropsychologist and practiced for many years before shifting to full time research and teaching. She relocated in 2007 to become a professor at Monash University. 

A major effort she is leading at the moment is the development of the Huntington’s Disease Network of Australia, which is building a registry of people across Australia who are affected by Huntington’s disease, and studying the prevalence of this disease in Australia, all in preparation for bringing new treatments to patients as soon as possible.