Patient Registry Reports
The Cystic Fibrosis Foundation Patient Registry was created nearly 50 years ago to collect information on the health outcomes, clinical care and demographic characteristics of people with CF who receive care at Foundation-accredited care centers.
This information is used to create CF care guidelines, assist care teams providing care to individuals with CF and guide quality improvement initiatives. Researchers also use the Patient Registry to study CF treatments and outcomes and to design CF clinical trials.
Each year, the Foundation publishes two Patient Registry data reports:
Data from more than 28,000 people with CF are included in the Foundation’s most recent Patient Registry annual reports (2013).
Please consider completing the survey to provide feedback about the reports and help us continue to improve them. We appreciate your interest in the Patient Registry reports and value your time and opinion.