Australian National Spinal Muscular Atrophy Registry

Information

The Australian National Spinal Muscular Atrophy (SMA) Registry provides Australian families with an opportunity to improve the outcomes of individuals affected by spinal muscular atrophy.

The Registry collates a patient’s clinical information about their disease. The Registry is a tool for clinicians and clinical trial sponsors to quickly identify patients suitable for clinical studies, particularly for those therapeutic strategies that target specific genetic defects. Potentially eligible patients will be informed about new trials and studies through the Registry’s clinical network.

Registry Location Australia
Registry Participation Voluntary
Registry Contact

Robin Forbes

Co-ordinator

Australian Neuromuscular Disease Registry

P: +61 3 9936 6740

E: anmdr@mcri.edu.au

 

Adding New Patients to Registry

Details on how to register can be found on the websites below.

Please see the website for more information

Australiannmdregistry.org.au