Building a national Duchenne muscular dystrophy patient registry in Canada

"Muscular Dystrophy Canada (MDC) is pleased to present a webinar on patient registries and participating in a Duchenne muscular dystrophy (DMD) registry. This webinar will shed light on life with DMD: How do we measure what matters to those living with DMD?

By the end of this 1 hour webinar, we hope to have answered the following questions:

1. What is a patient registry and why is it important to collect meaningful measures

2. What data is collected by the CNDR

3. What is the International Classification of Functioning, Disability and Health framework (ICF)

4. How is the data collected for people living with DMD used by the CNDR

5. How can you contribute to shaping the DMD registry?"