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

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

School of Medicine

Research output: Contribution to journal › Review article › peer-review

8 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 language	English (US)
Pages (from-to)	S44-S51
Journal	Pediatric pulmonology
Volume	52
DOIs	https://doi.org/10.1002/ppul.23790
State	Published - Nov 2017

Keywords

cystic fibrosis
epidemiology
patient registry
quality improvement
registries

ASJC Scopus subject areas

Pediatrics, Perinatology, and Child Health
Pulmonary and Respiratory Medicine

Access to Document

10.1002/ppul.23790

Cite this

@article{128e14c73dad4a36818ed7bbd5a370e0,

title = "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.",

keywords = "cystic fibrosis, epidemiology, patient registry, quality improvement, registries",

author = "Fink, {Aliza K.} and Loeffler, {Deena R.} and Marshall, {Bruce C.} and Goss, {Christopher H.} and Morgan, {Wayne J.}",

note = "Publisher Copyright: {\textcopyright} 2017 Wiley Periodicals, Inc.",

year = "2017",

month = nov,

doi = "10.1002/ppul.23790",

language = "English (US)",

volume = "52",

pages = "S44--S51",

journal = "Pediatric pulmonology",

issn = "8755-6863",

publisher = "Wiley-Liss Inc.",

}

TY - JOUR

T1 - Data that empower

T2 - The success and promise of CF patient registries

AU - Fink, Aliza K.

AU - Loeffler, Deena R.

AU - Marshall, Bruce C.

AU - Goss, Christopher H.

AU - Morgan, Wayne J.

PY - 2017/11

Y1 - 2017/11

N2 - 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.

AB - 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.

KW - cystic fibrosis

KW - epidemiology

KW - patient registry

KW - quality improvement

KW - registries

UR - http://www.scopus.com/inward/record.url?scp=85029458991&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=85029458991&partnerID=8YFLogxK

U2 - 10.1002/ppul.23790

DO - 10.1002/ppul.23790

M3 - Review article

C2 - 28910520

AN - SCOPUS:85029458991

SN - 8755-6863

VL - 52

SP - S44-S51

JO - Pediatric pulmonology

JF - Pediatric pulmonology

ER -

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

Abstract

Keywords

ASJC Scopus subject areas

Access to Document

Other files and links

Fingerprint

Cite this