People with cystic fibrosis continue to live longer and healthier lives, and the Patient Registry data support this general trend. To understand what this means for our community, however, it is important to understand how these numbers are calculated and what they represent.
CF Foundation-accredited care centers play an important role in research. They collect information on the health status of their patients with CF who agree to participate, and report that data to the CF Foundation Patient Registry. The information is available in aggregate to the CF community each year through the Data Report, the Highlights Report, and the Care Center Finder.
Nationwide Effort to Instill Best Practices for Cystic Fibrosis Care is Honored for Excellence
New Patient Data Posted Online Shows Improvements Across Care Center Network
Teams of dedicated health care professionals in a nationwide network of more than 130 Cystic Fibrosis Foundation-accredited care centers partner with people with CF and their families to provide expert care and specialized disease management.
Quarterly visits to a CF Foundation-accredited care center are the foundation of your treatment plan. By partnering with your care team, you can also adjust your treatment plan as new therapies become available, or your needs change over time.