Canadian Neuromuscular Disease Registry (CNDR)
Summary
The Canadian Neuromuscular Disease Registry (CNDR) is a Canada-wide registry for people diagnosed with a neuromuscular disease. It collects medical and contact information from individuals across the country. CNDR will help improve our understanding of neuromuscular disease and generate appropriate clinical research.
Call to action
Do you have a neuromuscular condition? Do you want to participate more in research and help researchers plan studies?
Who can participate
We are looking for Holland Bloorview clients to participate. We are looking for children/youth who:
• Are diagnosed with a neuromuscular condition
• Between the ages of 0 and 18 years old
Funding agency
Canadian Neuromuscular Disease Registry
What's involved
Your medical chart will be reviewed by the research team and information will be inputted into the CNDR database. This information will be updated on a yearly basis or when significant changes occur.
As an optional part of the study, you can choose to be contacted by CNDR for research opportunities.
Interested in participating
If you are interested in participating in this study or have additional questions, please contact the research team at neuromuscular.research@hollandbloorview.ca or 416-425-6220 ext. 6943 with your interest, and they will get back to you shortly. Contacting us does not obligate you or your child to participate in the study.
Recruitment is ongoing.
Additional information
Version 1 (11/22/2023), REB#: 0463
Canadian Neuromuscular Disease Registry
