The Cystic Fibrosis Foundation Patient Registry. Design and Methods of a National Observational Disease Registry.
Emily A KnappAliza K FinkChristopher H GossAse SewallJosh OstrengaChristopher DowdAlexander ElbertKristofer M PetrenBruce C MarshallPublished in: Annals of the American Thoracic Society (2018)
Registries such as the CFFPR are important tools for research, clinical care, and tracking incidence, mortality and population trends.