The Canadian CF Registry
CF clinic specific data from the Canadian Cystic Fibrosis (CF) Registry are now available to the public for the first time in Cystic Fibrosis Canada’s history, demonstrating enhanced focus on leading in quality improvement and excelling in CF care, and ultimately moves us closer to our goal of establishing national standards for CF care and treatment across Canada.
The first 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 42 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.