Welcome to the Australian Neuromuscular Diseases Registries
Recent scientific and medical advances have lead to substantial changes in the treatment of many neuromuscular diseases (NMD). New therapeutic strategies are being developed and, for some of these treatments, plans for large studies involving patients from more than one country are already in place.
The Australian neuromuscular diseases community has undertaken to develop Registries to collate a patient's gene sequence and some key clinical information about their disease.
Purpose
The NMD Registries provide an important enabling tool for clinicians and clinical trial sponsors to quickly identify patients suitable for each study, particularly 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.
Objectives
To improve care of NMD patients through the coordination of diagnosis and therapy and by ensuring new intervention strategies are available on an equitable and consistent manner across Australia; and
To improve opportunities for international collaboration by facilitating and accelerating the recruitment process of Australian NMD patients into new clinical trials and by participating in studies for the benefit of the world NMD community and the advancement of medical science.
Contact
For more information on the Australian Neuromuscular Dystrophy Registries, please contact the Office of Population Health Genomics.