More than 40 years ago, the CF Foundation created the Cystic Fibrosis Patient Registry to track the health of people with CF in the United States.
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The information in this registry allows health care professionals and researchers to identify new health trends, recognize the most effective treatments and design clinical trials for potential therapies.
The registry anonymously reports patient data from more than 27,000 CF patients who receive care at CF Foundation-accredited centers and agree to participate in the registry.
The information collected includes:
The participation of all people with CF provides data for health care improvement and research and helps to create a better picture of the current state of CF care.
This data also can be used to find areas where more work can be done to improve the health of those with the disease.