About 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 CF patients who receive care at a CF Foundation-accredited care center.The type of information collected includes state living in, height, weight, gender, genotype, pulmonary function test results, pancreatic enzyme use, length of hospitalizations, home IVs, and complications related to CF.
Information in the registry helps clinicians and researchers see new trends, design clinical trials to test new therapies and improve the delivery of care for people with CF.
