Patient Registry

Patient Registry

The CF Foundation Patient Registry collects information on the health status of people with cystic fibrosis who receive care in CF Foundation-accredited care centers and agree to participate in the Registry. This information is used to create CF care guidelines, assist care teams providing care to individuals with CF, and guide quality improvement initiatives at care centers. Researchers also use the Patient Registry to study CF treatments and outcomes and to design CF clinical trials.

2020 CF Foundation Patient Registry Reports
2020 Patient Registry Handout: CF Care & COVID Download (PDF)
2020 Patient Registry Annual Data Report Download (PDF)
Additional Resources
2019 Patient Registry Highlights Download (PDF)
Patient Registry Annual Data Report Technical Supplement Download (PDF)