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.
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Although adults with cystic fibrosis are at a significantly higher risk of developing colorectal cancer than the general population, colonoscopy screening is an effective way to prevent and treat colorectal cancer by helping to detect and remove polyps. People with CF should be screened starting at age 40 (or 30 for those who have had a transplant). Find out how early screening can help reduce the risk.
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.
Whether you're considering a lung transplant or maintaining your health if you've had a transplant, this list can help you learn about transplant centers, including the one your cystic fibrosis care team may have referred you to.
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.
You can best manage your health when you know what to expect, what resources you can use, and a community of people with whom you can share your experiences.