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Data that empower: The success and promise of CF patient registries
Author(s) -
Fink Aliza K.,
Loeffler Deena R.,
Marshall Bruce C.,
Goss Christopher H.,
Morgan Wayne J.
Publication year - 2017
Publication title -
pediatric pulmonology
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.866
H-Index - 106
eISSN - 1099-0496
pISSN - 8755-6863
DOI - 10.1002/ppul.23790
Subject(s) - medicine , presentation (obstetrics) , epidemiology , clinical epidemiology , patient registry , medline , foundation (evidence) , family medicine , pediatrics , pathology , surgery , archaeology , political science , law , history
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.[1][Morgan WJ, 2016]