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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The Success with Therapies Research Consortium helps the clinical study of interventions so people with cystic fibrosis can improve the consistency of their day-to-day management of their CF to optimize health outcomes and quality of life.
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If your child has cystic fibrosis, chances are you have some concerns about school fitness activities like physical education classes or school sports teams. Even though some people with CF have trouble breathing and tire easily, exercise can be especially important.
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Revised Law Includes Designated Funding for Rare Diseases
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Cystic Fibrosis Foundation Drug Development Model Spawns More Than 30 Promising Therapies
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This is an exciting time in cystic fibrosis clinical research. Not only are there several clinical trials of therapies to treat the underlying cause of CF, but there are also many trials to treat key symptoms of CF and improve quality of life. These include studies of antibiotics and anti-inflammatories to treat lung infections and inflammation, as well as treatments to improve nutrition and digestion.