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.
March 2024 Press Release on 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.
2022 Annual Data Report2021 Annual Data Report2020 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:
The year 2020 was one for the history books in so many ways. For those who monitor the state of cystic fibrosis (CF) in Canada, it will be remembered as a year filled with uncertainty, optimism and change.
Our Canadian Cystic Fibrosis Registry 2020 Annual Data Report sheds light on how the events of 2020, as well as advancements in treatments and access to new drugs over the last decade, have impacted people who live with cystic fibrosis.
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.
NOTE: We are amending this process and will confirm when available again.
Questions? Contact us at [email protected]
