It is estimated that over 20,000 people are affected by neuromuscular disorders in Australia and New Zealand.
With so many new diagnostic tests currently available, and increasing opportunities to improve patient outcomes through access to clinical trials, it is timely for Australia and New Zealand to establish a collaborative neuromuscular network. The diagnosis, treatment and prevention of neuromuscular disorders in Australasia will benefit considerably from a more coordinated and integrated approach to improving care, increasing innovation and decreasing cost. Such a Network will also increase our ability to provide advocacy for these rare and complex disorders, guiding best practice in their diagnosis and management and driving improved and equitable access to services.
The ANN has identified a number of themes and aims to address. Steering Committees have also been established in each of these focus areas.
Themes and Aims
1. Patient Diagnostic Network
To coordinate a national collaborative diagnostic service and research network for neuromuscular disorders that is cost-effective, maximises availability and minimises duplication of services. This will include introduction of new diagnostic methods into Australia and New Zealand, as well as introduction of screening for newly identified genetic disorders.
2. Patient Registries
To develop nationwide disease registers, based on accurate molecular diagnosis for patients with neuromuscular disorders, aligned with international registries such as the TREAT-NMD registries.
3. Clinical Trials and Clinical Network
To establish a clinical trials framework for neuromuscular disorders accessible to patients around Australia and New Zealand.