The Australian Neuromuscular Disease Registry (ANMDR) is an Australia-wide registry of people diagnosed with a neuromuscular disease. It collects important medical information from adult and child patients across the country to improve the understanding of neuromuscular disease and accelerate the development of new therapies.
A registry is a collection of information about individuals with a specific diagnosis or condition.
The aim of the ANMDR is to collect detailed information about individuals in Australia with neuromuscular conditions such as:
- Duchenne Muscular Dystrophy (DMD)
- Spinal Muscular Atrophy (SMA)
- Facioscapulohumeral Muscular Dystrophy (FSHD)
- Myotonic Dystrophy (DM)
We hope to be adding more neuromuscular conditions to the registry in the near future. The registry aims to collect data from both adults and children. Anonymised data from this registry will also be shared with a global neuromuscular registry organisation, the TREAT-NMD Neuromuscular Network.
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.