Dr Christine McCusker outlines the importance of a Canadian Registry and why collaborating will help determine the rate of PIDs in Canada, characterize the clinical presentations and identify prognostic factors with the goal to improving management and patient quality of life.
The data collected by the registry has the following objectives:
- To better characterize PIDs and HAE across Canada
- To facilitate diagnosis and management
- To act as a resource for patients, treating physicians and allied health professionals
- To act as a research tool to facilitate collaborative studies both nationally and internationally
Click the link below to view the video (sept 2016) – duration 20 minutes