The CNDR has been created to link healthcare providers, researchers, and patients in the fight against neuromuscular disease. All people in Canada who have been diagnosed with a neuromuscular disease are able to join.

The most important information you provide is your contact information and your diagnosis. This information is collected for all patients. Some patients also provide additional medical information such as their genetics, information on results from health tests, and information on the medications they take. Your doctor will collect and update your medical information in the registry each time you visit. How much information you decide to provide is up to you.

Before the CNDR collects your information you must provide your informed consent.

The greater the number of people with your disease that are part of the registry, the more researchers will know about Canadians with the disease. It is hoped that one day this will improve access to research opportunities and trials for people with all types of neuromuscular disease.