125-03 | Cystic Fibrosis (CF) Patient Registry

Overview

“Cystic Fibrosis (CF) Patient Registry”

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. 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 epidemiologic research can be performed; and current and accurate data can be provided to researchers and clinicians regarding practice patterns, age and gender distributions, clinical outcomes, mortality and morbidity rates. All patients diagnosed with CF and CF related disorders (e.g. CFTR-related metabolic syndrome, CFTR­ related disorder) that are seen at the MemorialCare Health System, Long Beach CF Clinic are eligible for the CF Patient Registry.