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.
The Cystic Fibrosis Foundation hosted a Congressional briefing on February 11 to discuss the benefits of the Foundation's model of specialized, coordinated care and its innovative strategies for drug development, and how they can serve as an example for other rare, chronic diseases.
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.
The Cystic Fibrosis Foundation has arranged for over 10,000 home spirometers to be provided to care centers to support continued access to high quality, comprehensive care during the COVID-19 pandemic.
Nine cystic fibrosis care centers were awarded the 2013 - 2014 Cystic Fibrosis Quality Care Award for outstanding service to people with CF and their families at the 28th annual North American Cystic Fibrosis Conference in Atlanta.