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Introducing: CF Registry Facts

Last month we launched the 2014 Canadian CF Registry Annual Report!

The Registry demonstrates our 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.

Throughout the month of August we would like to highlight some of the data from the report. Here are a few below!


The most recent data for 2014 shows the estimated median survival age to be 51.8 years of age. This means that a child with CF born in Canada in 2014 will have a 50% chance of living beyond 51.8 years based on current treatments, therapies and mortality rates.


The age of individuals living with Cystic Fibrosis today range from birth to almost 80 years old. The median age of all individuals reported on in 2014 was 21.9 years, almost 9 years higher than it was in 1989!


Malnutrition is common in individuals with cystic fibrosis as a result of pancreatic insufficiency. 86% of Canadians with CF must take pancreatic enzymes to digest food and absorb nutrients.


Cystic Fibrosis used to be thought of as a children’s disease. Thanks to significant progress in treatment and care, many people with CF reach adulthood. Today, almost 60% of all Canadians living with CF are adults.


Almost 60% of CF patients are diagnosed within their first year of life. Earlier diagnosis leads to earlier intervention and treatment which improves the long-term health outcomes of those living with CF.

“Using the Registry data, we were able to show the benefits of newborn screening (NBS) for CF in terms of nutrition and growth which can be used as an advocacy tool to ensure that NBS programs are implemented in all provinces across Canada.”

– Dr Anne Stephenson MD, PhD
Medical Director, Registry, Cystic Fibrosis Canada


Cumulatively, CF patients spent almost 25,000 days in the hospital. That adds up to 68.5 years!

You can read the full report online by clicking on the image below: