Canadian Neuromuscular Disease Registry
Scientific advances over recent years have lead to substantial changes in the treatment of many neuromuscular diseases. 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.
Several new therapeutic strategies for neuromuscular diseases 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 make sure that patients' details are all collected together in a single database or "registry" that contains all the information that researchers will need, including each patient's particular genetic defect and other key information about their disease.
The Canadian Neuromuscular Disease Registry (CNDR) is a Canada-wide registry of people diagnosed with a neuromuscular disease. It collects important medical information from patients across the country to improve the understanding of neuromuscular disease and accelerate the development of new therapies. For more information, please visit the CNDR website.
The TREAT-NMD network is creating this kind of registry in countries across Europe, and thanks to the support of colleagues and patients across the world, countries worldwide are joining this initiative. For more information, visit the TREAT-NMD website.