More than 40 years ago, the Cystic Fibrosis Foundation started a national patient registry to track the health of people with cystic fibrosis (CF) across the United States.
Today, the CF Foundation Patient Registry tracks the health of more than 24,000 people with cystic fibrosis who receive care at a CF Foundation-accredited care center.
The type of information collected includes: state of residence, height, weight, gender, genotype, lung function test results, pancreatic enzyme use, length of hospitalizations, home IV use, and complications related to CF.
Information in the registry helps clinicians and researchers see new trends in the health of people with CF, helps create care guidelines, design clinical trials to test new therapies and improve the delivery of care.
Updated 01/27/09
