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.

journal_name

Pediatr Pulmonol

journal_title

Pediatric pulmonology

authors

Fink AK,Loeffler DR,Marshall BC,Goss CH,Morgan WJ

doi

10.1002/ppul.23790

subject

Has Abstract

pub_date

2017-11-01 00:00:00

pages

S44-S51

issue

S48

eissn

8755-6863

issn

1099-0496

journal_volume

52

pub_type

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