Registry updates
Registry Update: A recap of 2025
The Registry works in partnership with patient support groups, TREAT-NMD and the Australasian Neuromuscular Network (ANN).
The Registry (ANMDR) continued to expand and grow throughout 2025. To summarise our main activities:
- ANMDR was approached by a number of different stakeholders, both overseas and local, with data enquiries for DMD, Myotonic Dystrophy, and SMA.
- Contribute registry data to local and international stakeholders via the TREAT-NMD network.
- Registry data was presented at national and international neuromuscular conferences.
- ANMDR continued to conduct updates with participants and families.
- ANMDR continued to recruit patients, and a summary of recruitment to date can be seen in the graph below.
The graph above shows the overall recruitment to the ANMDR by diagnosis. As of January 2026, there are 949 participants on the Registry.
Registry data has been published in the article: A state-of-the-art review of registries in spinal muscular atrophy: A valuable resource for clinical research.
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