Valuable clinical information from all of Canada’s cystic fibrosis clinics, who work with patients who consent to share it, helps us learn about trends and insights in health and healthcare, and to help improve the outcome of Canadians with CF.
Cystic Fibrosis Canada appreciates the participation of Canadians living with CF who consent to be a part of the Canadians Cystic Fibrosis Registry, and the CF clinics and team members who enter the data into it. Data such as demographics, genotype, lung function, height, weight, hospitalizations, medications and bacterial infections have been collected since the 1970s and are aggregated for publication, contributing greatly to CF Canada’s work.
New Survival Milestone
Each year, data from the Canadian CF Registry is summarized and published in an annual data report. An infographic highlighting key results is published alongside the detailed report. See more back-issues on our Publications & Financials page.
2024 Annual Data Report2023 Annual Data Report2022 Annual Data ReportWe value data and have strict measures in place to uphold the privacy of every person who gives permission for their clinical information to be input into the CF Registry. Here’s why we collect data:
Canadian CF Registry data can be made available for research and clinical study purposes following a formal request to Cystic Fibrosis Canada and pending the review and approval from the Registry Review Panel. There may be a fee associated with the administration, extraction and analysis of the data depending on the nature of the request.
Questions? Contact us at cfregistry@cysticfibrosis.ca
