Cystic Fibrosis Patient Registry

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Cystic Fibrosis Patient Registry

Brief description of study

The Cystic Fibrosis Patient Registry has served as the primary database for epidemiologic reports published since 1985; a version of the CF Patient Registry began in 1966. The first documentation of the epidemiologic factors in cystic fibrosis (CF) is from WarwickWJ and Pogue RE in 1969 and was based on national CF Patient Registry data. Since 1985, a registry of patients with CF seen at all Cystic Fibrosis Foundation-accredited care centers has been maintained and updated on an ongoing basis by the Cystic Fibrosis Foundation. This includes more than 110 CF care centers across the United States, and over 25,000 patients. The purpose of the CF Patient Registry is to gather and maintain data on all patients so that: (1) Epidemiologic research can be performed; and (2) Current and accurate data can be provided to researchers and clinicians regarding practice patterns, age and gender distributions, clinical outcomes, mortality and morbidity rates.

Clinical Study Identifier: S12-03596

Principal Investigator: Robert John Giusti.

Other Investigators: Eric Hamberger, Rany Condos.

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