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

Author:

Fink Aliza K.1,Loeffler Deena R.1,Marshall Bruce C.1,Goss Christopher H.2,Morgan Wayne J.3

Affiliation:

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

Funder

Genentech Epidemiological Study of Cystic Fibrosis Scientific Advisory Group

Cystic Fibrosis Foundation

Cystic Fibrosis Foundation's Registry/Comparative Effectiveness Research Committee

National Institutes of Health

U.S. Food and Drug Administration

Publisher

Wiley

Subject

Pulmonary and Respiratory Medicine,Pediatrics, Perinatology and Child Health

Reference88 articles.

1. Morgan WJ 2016 https://www.youtube.com/watch?v=l53Tu1_WHSw

2. Registries for robust evidence;Dreyer;JAMA,2009

3. The Cystic Fibrosis Foundation Patient Registry. Design and methods of a national observational disease registry;Knapp;Ann Am Thorac Soc,2016

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