The Canadian Neuromuscular Disease Registry (CNDR) encourages research that has tangible benefit to patients and promotes development of effective therapies for neuromuscular diseases including:

• Clinical research that will improve patient care and best practices
• Scientific research that increases understanding of disease pathology
• Epidemiological studies to better understand the nature and burden of neuromuscular disorders
• Clinical trials of new therapies

Data Requests

The CNDR entertains two different types of request for data.

• Research Proposal Submissions
• Statistical Data Requests

Data Release

The CNDR releases de-identified data only. Identified data is never released.

The CNDR imposes conditions of data release on each dataset on a case by case basis. These conditions are imposed to protect the integrity of the CNDR, to protect the privacy of the patients registered in the CNDR, and to ensure that the use of the data benefits the patients and families affected by neuromuscular disease in the best possible way.

Data can only be released for a specific, identifiable purpose.

Data must be released to specific individuals or groups and will be under the custodianship of a specific individual.