F07 the Huntington’s Disease Network of Australia (HDNA): Preparing for the Advent of New Therapies for HD

BackgroundClinical trials around the globe are testing potentially life-changing treatments for Huntington’s disease (HD). In Australia, we recognize that preparations are essential to facilitate regulatory approval and government subsidization, and to prepare clinical sites to rapidly deploy new treatments. The Huntington’s Disease Network of Australia (HDNA), formed in 2020 with funding from the Australian National Health and Medical Research Council, is scaling up preparation for the advent of new treatments.Methods and Results1) We launched a purpose-built HD registry for all people affected by HD (diagnosed, at risk, family members, carers) to map their locations, obstacles in accessing HD clinical care, community services, and their experiences with Commonwealth-supported disability insurance entitlements; we will present findings from the first 50 participants. 2) The HDNA Prevalence Study is underway; progress to date, milestones and timelines to completion will be presented. 3) We formed an Australian HD clinical trial network with five sites so far (across four of the 8 states and territories), which we will present. 4) We will provide progress to date on a model of HD care specific to the Australian health services, aged care, and disability insurance contexts. 5) Finally, we will describe our culturally tailored HD project, facilitating inclusiveness of Indigenous/Aboriginal and Torres Strait Islander communities.ConclusionsLike Australia, many countries may be reflecting on their preparedness for the advent of new life-changing therapies for HD. By sharing our approaches and resources, together we hope to improve efficiency in bringing new therapies to people with HD.