The term neuromuscular disease includes over 40 diseases. These diseases affect how muscles and nerves work. Each of the diseases is rare. Together, they affect millions of people worldwide.

When researchers are planning a study, suitable patients need to be found and contacted quickly. The best way to make this happen is to collect medical and contact details from all patients into a database or registry. The registry must contain all the information that researchers will need. This includes important health and genetic information.

Gathering information from all the people in Canada diagnosed with neuromuscular disease into the CNDR could help researchers see patterns and make new observations to help them unlock the secrets of how these diseases work.

What Do I Have to Do to Join the Registry?

If you agree to join the registry, you need to provide your informed consent. This involves signing a consent form. A signed consent form allows your doctor to send relevant details about your health to the CNDR.

Will I Benefit From Registering?

If you agree to join the CNDR there may or may not be a direct benefit to you. There is no guarantee that participating in the CNDR or other research will help you.

Some potential benefits of the CNDR include:

• The CNDR will tell you if your disease is eligible for further data collection.
• The CNDR will tell you if you might be a suitable candidate for a research study.
• Your information might help other people with neuromuscular diseases. For example your information might help to tell researchers how many people in Canada have neuromuscular disease.
• The CNDR will publish some general information from the registry on this website. You may learn about your disease and how many people in Canada have it.

Anyone diagnosed with a neuromuscular disease can participate in the CNDR. Joining is voluntary, confidential, and free. You may withdraw from the registry at any time. You will not receive money for participating in the CNDR. No procedures or treatments are required to be part of the CNDR. You do not need to make extra visits to your doctor.