Your data is critical in the fight
to defeat Duchenne.
The Canadian Neuromuscular Disease Registry (CNDR) is a Canada-wide registry of people diagnosed with a neuromuscular disease, like Duchenne or Becker muscular dystrophy. It safely and securely collects important medical information from patients across the country to facilitate research that benefits patients, families and caregivers. Those who participate can feel confident they are helping to promote the development of effective therapies for neuromuscular diseases.
Defeat Duchenne Canada was an original funder of the CNDR, and to date, has contributed more than $1 million towards the development and maintenance of the registry.
Currently, over 4,600 neuromuscular patients have registered from across Canada and Defeat Duchenne Canada encourages you to join!
Why register?
The CNDR facilitates research that benefits patients, families and caregivers, and promotes the development of effective therapies for neuromuscular diseases, like Duchenne muscular dystrophy.
Some benefits of joining the CNDR include:
- Notification of clinical trials you may qualify for
- Notification of scientific research and new therapy access
- Participation in survey-based research studies
- Contribution of your medical data to improve neuromuscular patient care
- Contribution of your medical data to research studies on disease causes, risk factors and disease progression and therapy use in Canadians
What is required to register?
Joining is voluntary, confidential and free. You may withdraw from the registry at any time. No procedures or treatments are required to be part of the CNDR, and you do not need to make extra visits to your doctor. Simply provide consent for your relevant health data to be shared with the CNDR.
How can I register?
You can register safely and securely online or through your neuromuscular care team in-clinic.