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.

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 have partnered with the ANMDR to help them grow the number of participants from NSW, as well as add 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.

If you would like to help us grow the registry and see more clinical trials come to Australia as a result, you can sign up at