The data goes through a rigorous review process
The CF Patient Registry is an invaluable tool for medical experts, healthcare professionals, individuals with CF, and their families. Moreover, it remains an important tool for researchers who wish to follow observational studies about individuals with CF in the United States.
All requests made for Registry data have to undergo a thorough review by the Patient Registry/Comparative Effectiveness Research Committee, which consists of CF health experts and researchers working with CFF staff members. Once the application and variable list have been submitted, the entire review process takes up to 2-3 months. If the application meets all regulatory requirements, it is approved and delivered to the researchers. The researchers who receive Registry data are encouraged to present their findings among the CF community through peer-reviewed publications and at conferences, such as the North American Cystic Fibrosis Conference.