Data that empower: The success and promise of CF patient registries

Aliza K. Fink, Deena R. Loeffler, Bruce C. Marshall, Christopher H. Goss, Wayne J Morgan

Research output: Contribution to journalArticle

7 Scopus citations

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.

Original languageEnglish (US)
JournalPediatric Pulmonology
DOIs
StateAccepted/In press - 2017

Keywords

  • Cystic fibrosis
  • Epidemiology
  • Patient registry
  • Quality improvement
  • Registries

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health
  • Pulmonary and Respiratory Medicine

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