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 26,000 people with CF 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 data through the patient registry, the Foundation educates and hopes to foster stronger partnerships among people with CF, their families and care center staff.
Updated 12/8/2011
