The Cystic Fibrosis Foundation's Patient Registry is used to track the health of CF patients in the United States. This information allows us and CF researchers to identify trends, learn about the most effective treatments and design clinical trials for potential new therapies.
During your first visit, we will ask for your consent to participate in the registry. Your participation provides data for healthcare improvement and research, while helping create the clearest picture of the current state of CF care.
Your personal CF data, including genetics, sweat test results, recent sputum culture and visit history is graphed and given to you at every visit. If you have questions, please ask your doctor or nurse to review the data with you.