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.

Recruitment by Dx 01/2024

The graph above shows the overall recruitment to the ANMDR by diagnosis. As of January 2024, there are 811 participants on the Registry.

Proudly in partnership with