Canadian CF Registry
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To read previous Canadian CF Registry Annual Data Reports, click below:
2020 TRENDS REPORT: A DISEASE IN TRANSITION
In 2020, Cystic Fibrosis Canada has launched a Trends Report that examines key trends in Canadian CF health data.
For those who monitor the state of cystic fibrosis (CF) in Canada, 2020, it will be remembered as a year filled with uncertainty, optimism, and change. Cystic Fibrosis Canada’s Canadian Cystic Fibrosis Registry 2020 Annual Data Report shed light on how the events of 2020 as well as advancements in treatments and access to new drugs have impacted people who live with cystic fibrosis. In the 2020 Trends Report, we explored three trends that emerged from the data in 2020 and asked what they might mean for the Canadian CF community. It is important to note that we did not conduct scientific studies and aren’t able to draw any specific conclusions, however, we can ask some intriguing questions given the observed data.
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HISTORY OF THE CANADIAN CF REGISTRY
The national Canadian CF Registry was created in the early 1970s with the goal of monitoring important clinical trends in the Canadian CF population. The Registry has played an invaluable role in helping to improve the quality and length of life of people with cystic fibrosis.
Since the majority of CF patients attend one of 41 accredited CF clinics (paediatric and adult) within Canada, it is felt that the Canadian CF Registry is very complete (i.e. it includes data on virtually all Canadians with cystic fibrosis) — giving a comprehensive picture of the CF population in this country.
The Registry is used both by CF clinicians and researchers to improve their knowledge of disease patterns and care of patients with cystic fibrosis. The data collected within the Registry can be used to better understand clinic populations, respond to emerging health care issues, develop quality improvement initiatives and track clinical outcomes over time. These efforts will ultimately translate into improved outcomes for people with cystic fibrosis.
With the continued cooperation and participation of clinical personnel and Canadian CF patients, along with the generous support of donors, it will be possible to ensure that data remain available and worthy of study in the future.
In addition to the Annual Data Report, annual aggregated clinical outcomes are also available for each CF clinic, demonstrating enhanced focus on quality improvement in the care and treatment of CF care across Canada.
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