Find a patient registry

The Canadian Neuromuscular Disease Registry (CNDR)

The 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. Anyone with a neuromuscular disease is eligible. Enrollment is voluntary, confidential and free of charge.

For more information, please visit the CNDR website or talk with your neuromuscular specialist.

Disorder-specific registries

Registries have been developed by groups looking to collect information about specific neuromuscular disorders.

Some of these initiatives are Canadian, others are based in the USA or Europe. Patient registries are also expanding beyond national borders to create global networks, allowing for greater information sharing and fostering a more collaborative research environment. With their greater scope, global registries are particularly well-positioned to aid researchers in determining how common certain diseases are and what models of care are most effective in treating them.

To find out more about global registries visit TREAT-NMD

Should you sign up with a research registry about your disease? Read this article published in MDA’s Quest magazine

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