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Several new treatment strategies for neuromuscular diseases, like Spinal Muscular Atrophy Association of Australia, target specific genetic defects. When a clinical trial is being planned, it is very important that patients suitable for that trial can be found and contacted quickly. The best way of ensuring this can happen is to collect patients’ details in a single database, or patient registry, which contains all the information that researchers will need, including each patient’s particular genetic defect and other key information about their disease. The TREAT-NMD network is creating this kind of registry in countries across Europe. As well as each national registry, TREAT-NMD is also creating a single global registry which will combine the information from each of the national registries around the world, including those in Australia; this will ensure that patients who register in their national registry anywhere in the world can be contacted if their profile fits a clinical trial. In addition, these registries will help researchers to answer questions such as how common diseases like Spinal Muscular Atrophy Association of Australia are in Europe, America, Australia, Japan and other member countries. This information will also support other activities to improve patient care, such as the assessment of standards of care.
If you are a person living with Spinal Muscular Atrophy Association of Australia here in Australia please contact Julie Cini at the Spinal Muscular Atrophy Association of Australia Head office on (03) 9545 3633 for a comprehensive information sheet and consent form to start the registration process.