Nationwide Effort to Instill Best Practices for Cystic Fibrosis Care is Honored for Excellence
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Press Release
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Oct. 21, 2008
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3 min read
Press Release
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March 18, 2008
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3 min read
New Patient Data Posted Online Shows Improvements Across Care Center Network
Press Release
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Jan. 28, 2008
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4 min read
Diagnosing CF is a multistep process. A complete diagnostic evaluation should include a newborn screening, a sweat chloride test, a genetic or carrier test, and a clinical evaluation at a CF Foundation-accredited care center.
Close to 40,000 people in the U.S. have cystic fibrosis, a rare genetic disease. The majority of people with CF are diagnosed by age 2 thanks to newborn screening tests. If you have CF or are considering testing for it, knowing about the role of genetics in CF can help you make decisions about your health care.
Cystic fibrosis is a genetic disorder that affects the lungs, pancreas, and other organs. Keep reading to learn how to treat and live with CF.
The CF Foundation Patient Registry collects information on the health status of people with cystic fibrosis who receive care in CF Foundation-accredited care centers and agree to participate in the Registry. This information is used to create CF care guidelines, assist care teams providing care to individuals with CF, and guide quality improvement initiatives at care centers. Researchers also use the Patient Registry to study CF treatments and outcomes and to design CF clinical trials.