DMD registry – Australia
In Australia, Duchenne Foundation Australia, in conjunction with the Muscular Dystrophy Association, the Muscular Dystrophy Foundation, other support groups and affected families, made representations to state and federal politicians and health ministers to establish a national registry.
These campaigns led to the development of the Australian National Duchenne Muscular Dystrophy (ANDMD) Registry to collate clinical and genetic information about this disease. The establishment of the Registry was made possible by the inter-jurisdictional cooperation of the state clinical and genetic testing services across the country with coordination and key support from the Office of Population Health Genomics, Department of Health WA.
The ANDMD Registry provides means for clinicians and clinical trial sponsors to quickly identify patients suitable for specific studies. It feeds directly into the TREAT-NMD global network of registries. This opens up the opportunity for Australian DMD patients to participate in clinical trials being undertaken anywhere in the world. Of current relevance are those trials that target specific genetic mutations, such as exon skipping in DMD, as a way to reduce the symptoms and improve quality of life.
For more information or to register, visit www.nmdregistry.com.au/dmd
If you have any questions contact Hugh Dawkins.
Contact Number:+61 892226842
189 Royal Street