The PREDICT-HD study is about to start in Australia - in Sydney and possibly other states.
PREDICT-HD (Neurobiological PREDICTors of Huntington's Disease) is a study developed by the Huntington Study Group (HSG) under the direction of Jane Paulsen PhD, Professor of Psychiatry, Neurology and Neurosciences at the University of Iowa College Medicine, USA.
In September 2001 the HSG received funding from the National Institutes of Health (USA) to conduct the PREDICT-HD study which will cover centres in the USA, Canada and Australia.
Many of you will remember Jane as the keynote speaker at the International Huntington Association Meeting in Sydney in 1997. In fact her presentation inspired the name for our newsletter, Gateway - Jane likened the functions of the brain to a gate. And of course, her booklet Understanding Behaviour in Huntington Disease is an excellent resource for both family carers and health professionals.
We have recently been advised that Westmead Hospital has ethics approval to commence a clinical study of the PREDICT-HD study.
Dr Elizabeth McCusker, Director, NSW Huntington Disease Service, will head the PREDICT-HD team at Westmead Hospital as Principal Investigator. The PREDICT-HD staff members include:
PREDICT-HD is a collaborative research effort by approximately 20 HSG centers to study persons at risk for HD who are aware of their gene status. People who have tested gene positive and gene negative will be included in the study. It is an observational study. This means that research participants in this study, will be examined periodically, but will receive no experimental drugs or treatments. It is a study that is expected to give essential information to help design future studies of experimental drugs aimed at slowing or postponing the onset of HD in healthy persons at risk for developing HD.
The study, will use a variety of tests to examine the nature and pattern of neurobiological changes and neurobehavioral changes that occur in the period leading up to a diagnosis of HD. The intent of the study is to learn more about the beginning changes in thinking skills, emotional regulation, brain structure and brain function as a person begins the transition from health to HD.
The team at Westmead Hospital is currently seeking men and women to participate in the trial.
The essential requirements for participants are:
For more information please contact Jane Griffith at Westmead Hospital
For more information about the Huntington Study Group visit their website.
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