The Australian Clinical Trials Consortium is a group of Australian HD professionals who work together to enable eligible Australians the opportunity to participate in HD clinical trials.
Initiated in 2018 by Professor Julie Stout of Monash University, the consortium was founded by a group of clinical HD professionals from Melbourne who shared a common eagerness to have Australian clinical sites considered by trial sponsors as feasible trial sites. Until recently, the majority of HD clinical trial sites selected by trial sponsors were sites from the US and across Europe. Australia was not often considered a potential source of trial sites.
Initial efforts saw the establishment of two clinical trial sites in Melbourne, which was soon expanded to also include sites in Brisbane, Sydney, and Perth. Planning is currently underway to establish a clinical trial site in Adelaide. Most sites consist of both a HD clinic where trial participants are usually screened and enrolled into the trial, and a clinical trial facility which is a separate centre specialising in clinical trial activities. See diagram below for more detail about the sites in each participating Australian state.
All active Australian sites participated in the two recent Wave sponsored trials; Precision-HD1 and Precision-HD2, and both Melbourne sites as well as the Sydney site participated in the Roche sponsored trial, known as Generation-HD1. Unfortunately, all three trials were discontinued early due to the drug treatments not showing the expected effect in people with HD. However, the findings are important for the development of future treatments including Wave’s new Precision-HD3 trial of which both Melbourne sites and the Sydney and Perth sites are participating in.
Consortium members include a range of HD specialists across Australia including neurologists, psychiatrists, neuropsychologists, researchers, nurses, and various types of allied health professionals. Members meet 4-5 times a year to discuss current trials Australian sites are participating in, any upcoming clinical trials which Australian sites may be considered for, as well as general HD clinical matters relevant to all sites, and the strategic direction of the consortium.