Patient Registry Report

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 caregivers and researchers to identify new health trends, recognize the most effective treatments and design clinical trials for potential therapies.

The registry anonymously reports patient data from more than 24,000 CF patients who receive care at CF Foundation-accredited centers. The information collected includes:

• state of residence
• height
• weight
• gender
• genotype
• lung function test results
• pancreatic enzyme use
• length of hospitalizations
• home IV use
• complications related to CF

By providing care center data through the patient registry, the Foundation educates and fosters stronger partnerships among people with CF, their families and care center staff.

Updated 09/25/09