Registry updates

Registry Update: A recap of 2023

The Registry is fortunate to have continued support from TREAT-NMD, the Australasian Neuromuscular Network (ANN), MDNSW, and the Daniel Ferguson LGMD Foundation.

The Registry (ANMDR) continued to expand and grow throughout 2023. 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.
• Registry data was presented at various 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 2024, there are 811 participants on the Registry.