Dean Cruikshank

The Canadian Cystic Fibrosis Foundation Patient Data Registry (CPDR)

The Canadian Cystic Fibrosis Patient Data Registry, or CPDR, has been in existence since the early 1970s as a means to monitor important statistical trends in the Canadian CF population. The goal of the database is to collect information on individuals with CF to better understand the illness and ultimately improve care and survival of those with CF in Canada.

The CPDR has played a significant role in helping the Canadian CF Foundation make progress toward achieving its ultimate goal of improving the quality and length of life of people with CF.

The CPDR is used by clinicians and researchers to better understand CF and to follow trends over time. The registry collects important clinical data such as lung function, nutrition markers (e.g. height and weight), microbiology, and CF-related complications on individuals followed at the 40 accredited CF centres across the country. Survival statistics are generated and the CPDR data shows that estimated median age of survival in Canadians with CF continues to increase. In fact, Canada has the highest median age of survival for CF patients in the world! To view the most recent CPDR annual report, click here.

If you have not already done so, you will be asked to give your consent to allow us to submit data to the CDPR annually.