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

doi:10.1002/ppul.23790

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

Pediatr Pulmonol. 2017 Nov;52(S48):S44-S51. doi: 10.1002/ppul.23790. Epub 2017 Sep 14.

Authors

Aliza K Fink¹, Deena R Loeffler¹, Bruce C Marshall¹, Christopher H Goss², Wayne J Morgan³

Affiliations

¹ Cystic Fibrosis Foundation, Bethesda, Maryland.
² Department of Medicine and Pediatrics, University of Washington, Seattle, Washington.
³ Department of Pediatrics, University of Arizona, Tucson, Arizona.

PMID: 28910520
DOI: 10.1002/ppul.23790

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.

Publication types

Review

MeSH terms

Biomedical Research
Cystic Fibrosis / epidemiology*
Cystic Fibrosis / therapy
Humans
Registries*