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Care Centers | Patient Registry | Researcher Resources
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.
Care Centers | North American CF Conference | Our Research Approach | Patient Registry
The Patient Registry: Where We’ve Been, Where We’re Going

In the third plenary, Dr. Wayne Morgan talked about the connection between cystic fibrosis care and the Patient Registry, and introduced a new way for people with CF, along with their families, to help shape the research conducted using the Registry.

Aliza Fink, D.Sc.
| 4 min read
Care Centers | Care Team
The Experience of Care Survey: Your Voice Can Make a Difference

CF care centers have worked hard to improve health outcomes. A new initiative seeks to improve the quality of our experiences at care centers. 

Rich DeNagel
| 5 min read
Our Advocacy Work | Care Centers
Teaching as We Learn: Visiting a CF Care Center with Policymakers

A day spent visiting a care center proved the perfect introduction to the CF story for legislative staffers.

Stacey Falardeau
| 4 min read
Care Centers | Care Team | Social Life and Relationships
5 Things We Heard About Partnering in CF Care

The Partnerships for Sustaining Daily Care (PSDC) team had the opportunity to hear from people with cystic fibrosis, families and care teams at five Family Education Days at care centers across the country. Here's what we heard.

Cindy George
| 5 min read