Data that empower: The success and promise of CF patient registries. (14th September 2017)

• Record Type: Journal Article
• Authors: Fink, Aliza K.; Loeffler, Deena R.; Marshall, Bruce C.; Goss, Christopher H.; Morgan, Wayne J.
• Other Names: Esther Charles R. guestEditor.; Murphy Thomas guestEditor.; Noah Terry guestEditor.
• Is Part Of: Pediatric pulmonology. Volume 52(2017)Supplement 48
• Page Start: S44
• Page End: S51
• Publication Date: 2017-09-14
• Subjects: cystic fibrosis -- epidemiology -- patient registry -- quality improvement -- registries; Pediatric respiratory diseases -- Periodicals; Pediatrics -- Periodicals; 618.922
• DOI: 10.1002/ppul.23790
• Languages: English
• ISSNs: 8755-6863

Abstract

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.1