What is the benefit of the registry?
By having a database of patients with neuromuscular diseases, clinicians and researchers are better able to understand the underlying history of these conditions and how best to monitor and treat them.
More immediately, recruitment into clinical trials, and finding clinics and services, will become more easily accessible through the registry hub. Details and information about clinical trials will be readily available, and having a registered neuromuscular hub can increase our ability to attract more clinical trials to Australia.
We invite all Australians with neuromuscular disease to register. By having a unified national neuromuscular disease registry, we will have a platform for patients, clinicians, researchers, and industry to work together to discover new therapies and advance scientific knowledge for these rare diseases.