‘Cure FSHD’ has been designed for and with individuals living with Facioscapulohumeral Muscular Dystrophy (FSHD).
Cure FSHD is more than just a disease registry—it is a personalised e-health ecosystem that connects patients with clinical trial opportunities, fast-tracking the development of future therapies. Through Cure FSHD, patients can complete their Clinical Trial Passport, a revolutionary trial readiness tool housing each patient’s vital genetic and clinical data, including:
• Saliva and blood DNA genetic and epigenetic results
• AI-enhanced full-body MRI muscle scans showing disease pathology through Springbok Analytics
• Mental health screening
• Natural history and disease progression questionnaires
Cure FSHD is also a gold standard registry, affiliated with Treat-NMD’s global neuromuscular registry network. This means that Australian data is central to international disease research and industry reporting, making us a site for the development of global therapies.
Beyond clinical impact, Cure FSHD is a movement that unites the FSHD community, providing a comprehensive view of the prevalence and burden of FSHD. For the first time, families across the nation will have their experiences quantified, offering a clearer picture of the true impact of FSHD.
Watch the recording now: ‘Cure FSHD’ Webinar Recording – YouTube
Join ‘Cure FSHD’ now: Cure FSHD
Find out more about clinical trials: Medical Research – FSHD