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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Caring for anyone with a long-term disease — especially if that person is your child — is stressful. Parents of children with cystic fibrosis are more likely to experience anxiety, depression, or both compared to parents in general.
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.
People with chronic diseases, such as cystic fibrosis, are at greater risk for developing clinical depression. When left untreated, depression can interfere with your ability to manage your CF effectively and experience a better quality of life.