Patient Registry Report 

Click on image to download the 2012 CFF Patient Registry
Click image above to download. 

More than 40 years ago, the CF Foundation created the Cystic Fibrosis Patient Registry to track the health of people with CF in the United States.

The information in this registry allows health care professionals and researchers to identify health trends, learn about the most effective treatments and design clinical trials for potential new therapies.

The registry anonymously reports data from more than 27,000 CF patients who receive care at CF Foundation-accredited centers and agree to participate in the registry.

The information collected includes:

  • state of residence
  • height
  • weight
  • gender
  • CF mutations
  • lung function test results (PFT)
  • medication use
  • complications (problems) related to CF

Participation by all people with CF provides data for health care improvement and research, while helping to create the clearest picture of the current state of CF care.

This data also can be used to find areas where more work can be done to improve the health of those with the disease.

Updated: 3/19/2014