About us

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)
• Limb-Girdle Muscular Dystrophy (LGMD)
• Collagen-VI Related Disorders (COL-VI)
• Congenital Muscular Dystrophies
• Congenital Myopathies
• Centronuclear or Myotubular Myopathies (including X-linked myotubular myopathy, XLMTM)
• GNE Myopathy

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.