The Patient Registry is an invaluable tool for researchers conducting observational studies about people with CF in the U.S. About 50,000 individuals have been followed in the Registry since its inception in 1986; many of them have been included for over 20 years.
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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.
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.