@article{0ac7a467bbae4efb9b02b76b7d506834,
title = "Data that empower: The success and promise of CF patient registries",
abstract = "In this article, we describe existing CF registries with a focus on US registry data collected through the CF Foundation Patient Registry (CFFPR) and the Epidemiologic Study of CF (ESCF); highlight what registries have taught us regarding epidemiology of CF; showcase the impact of registries on research and clinical care; and discuss future directions. This manuscript complements the plenary address given by Dr Wayne Morgan at the 2016 North American CF Conference by summarizing the key points from the presentation and providing additional detail and information.",
keywords = "cystic fibrosis, epidemiology, patient registry, quality improvement, registries",
author = "Fink, {Aliza K.} and Loeffler, {Deena R.} and Marshall, {Bruce C.} and Goss, {Christopher H.} and Morgan, {Wayne J.}",
note = "Funding Information: Genentech Epidemiological Study of Cystic Fibrosis Scientific Advisory Group; Cystic Fibrosis Foundation's Data Safety Monitoring Board; Cystic Fibrosis Foundation's Registry/ Comparative Effectiveness Research Committee; NIH, Grant numbers: R01HL103965, R01HL113382, R01AI101307, U M1HL119073, P30DK089507; FDA, Grant number: R01FD003704 Funding Information: Chris Goss received funding from the Cystic Fibrosis Foundation, the NIH (R01HL103965, 14 R01HL113382, R01AI101307, U M1HL119073, and P30DK089507), and the FDA (R01FD003704). Wayne Morgan received funding from the Genentech Epidemiological Study of Cystic Fibrosis, Scientific Advisory Group and the Cystic Fibrosis Foundation{\textquoteright}s Data Safety Monitoring Board and Registry/Comparative Effectiveness Research Committee. Publisher Copyright: {\textcopyright} 2017 Wiley Periodicals, Inc.",
year = "2017",
month = nov,
doi = "10.1002/ppul.23790",
language = "English (US)",
volume = "52",
pages = "S44--S51",
journal = "Pediatric pulmonology",
issn = "8755-6863",
publisher = "Wiley-Liss Inc.",
}