Canadian Cystic Fibrosis Registry

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.

2024 Annual Data Report

Lorna, who lives with CF, poses with her husband outside of their home in Saskatchewan, surrounded by trees.

The CF Registry: a unique source of essential information

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

Why collect data?

We 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:

To conduct research investigating differences in health outcomes within the population, benefits of newborn screening, survival post-transplant, among many others.
To advocate for more funding and resources in support of CF clinics.
To educate, promote awareness and increase knowledge about CF.
To support clinical care, respond to emerging healthcare issues, monitor epidemiological trends and implement quality improvement initiatives

Annual Registry Data Reports

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 Report 2023 Annual Data Report 2022 Annual Data Report

A history of the Canadian CF Registry

1978 First joint US-Canada CF Registry Report is published
1984 Independent CF Registry is established and managed by Cystic Fibrosis Canada
1988 Study using CF Registry data supports high-fat diet that becomes global standard in CF care
1991 After the discovery of the CF gene in 1989, CF Registry begins tracking genotype
2008 Electronic submission of data begins
2015 Updated web-based platform launches with improved functionality and features
2016 Study co-authored by Cystic Fibrosis Canada using CF Registry data reveals benefit of newborn screening for CF in Canada
Future: Develop digital health tools to improve efficiencies

Applying to use Registry 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