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.
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.
March 2024 Press Release on new survival milestoneWhy 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.
2022 Annual Data Report2021 Annual Data Report2020 Annual Data Report
2020 Trends Report: A disease in transition
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.
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.
NOTE: We are amending this process and will confirm when available again.
Questions? Contact us at [email protected]