CF Foundation Patient Registry

The CF Foundation Patient Registry was created in 1966 to track the health of people with cystic fibrosis who receive care at CF Foundation-accredited care centers and agree to share their data. Registry data inform continued quality improvements in treatment and specialized care. Each year, the CF Foundation analyzes these data and shares this information with the CF community through the Patient Registry Annual Data Report.

Median Age of Survival

The latest Registry data show steady gains in survival for people with CF. Based on 2023 Registry data, the median age of survival for people with CF who were born between 2019 and 2023 is predicted to be 61 years. To understand what this means for our community, it is important to understand how this number is calculated and what it represents.

A median is the middle number in a number set. So of all the babies with CF born between 2019 and 2023, we predict that half will live longer than age 61 and half will die before that age. This prediction assumes that currently available CF treatments do not change within those babies’ lifetimes. 

Sometimes the term “life expectancy” is used instead of median age of survival. But life expectancy is calculated in a different way. Life expectancy refers to an average rather than a median, which means it can be influenced by extreme outliers in a number set. For this reason, the CF Foundation focuses on median age of survival. 

Improving Life for Everyone With CF

Many people with CF still face significant challenges, including frequent hospitalizations, complications such as CF-related diabetes and depression, and time-consuming treatment plans that can take 2 to 3 hours a day.

Data also show that of the deaths reported in the Registry in 2022, known as the median age of death, half occurred before the age of 37 — meaning too many people with CF miss the opportunity to finish school, begin careers, start families, and reach other milestones.

So, we still have a long way to go — particularly for those who have faster and more severe disease progression and for those who cannot benefit from modulator therapy. The CF Foundation continues to work to develop transformative treatments and find a cure for all people with CF.

What Does Survival Age Data Mean for Me?

Although median age of survival and median age of death can be helpful to track the progress made for the entire population with CF followed by the Registry, these numbers do not predict how long you, as an individual, will live.

As statistical calculations for the entire population of people with CF, neither of these figures take into consideration your personal characteristics, such as your mutations, how severe your disease is, or how you respond to different CF treatments as part of your daily CF care.

“Statistics are impersonal. They are about 'people with CF,' but not necessarily me.” Linda Bowman, adult with CF

These calculations also don't reflect continuous improvements in specialized CF care. And because CF is a rare disease, small changes in the population can have a noticeable impact on survival calculations.

For these reasons, you should talk to your CF care team if you have questions specific to your personal health.