Literature DB >> 29555479

Cystic fibrosis patient registries: A valuable source for clinical research.

Elliott C Dasenbrook1, Gregory S Sawicki2.   

Abstract

Cystic Fibrosis (CF) patient registries are valuable data sources for researchers studying the natural history, treatment paradigms, and long-term health outcomes of individuals with CF. In this review, we discuss the role of CF patient registries in facilitating comparative effectiveness research, particularly evaluating therapies and variation in health care delivery. We also discuss the limitations of registry-based research, particularly indication bias, as well as statistical methods that can be used to address these issues.
Copyright © 2018 European Cystic Fibrosis Society. Published by Elsevier B.V. All rights reserved.

Entities:  

Keywords:  Cystic fibrosis; Patient registry

Mesh：

Year:  2018        PMID： 29555479     DOI： 10.1016/j.jcf.2018.03.001

Source DB:  PubMed          Journal:  J Cyst Fibros        ISSN： 1569-1993            Impact factor:   5.482


  5 in total

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Review 2.  The future of cystic fibrosis care: a global perspective.

Authors:  Scott C Bell; Marcus A Mall; Hector Gutierrez; Milan Macek; Susan Madge; Jane C Davies; Pierre-Régis Burgel; Elizabeth Tullis; Claudio Castaños; Carlo Castellani; Catherine A Byrnes; Fiona Cathcart; Sanjay H Chotirmall; Rebecca Cosgriff; Irmgard Eichler; Isabelle Fajac; Christopher H Goss; Pavel Drevinek; Philip M Farrell; Anna M Gravelle; Trudy Havermans; Nicole Mayer-Hamblett; Nataliya Kashirskaya; Eitan Kerem; Joseph L Mathew; Edward F McKone; Lutz Naehrlich; Samya Z Nasr; Gabriela R Oates; Ciaran O'Neill; Ulrike Pypops; Karen S Raraigh; Steven M Rowe; Kevin W Southern; Sheila Sivam; Anne L Stephenson; Marco Zampoli; Felix Ratjen
Journal:  Lancet Respir Med       Date:  2019-09-27       Impact factor: 30.700

3.  Use of proton pump inhibitors is associated with lower hemoglobin levels in people with cystic fibrosis.

Authors:  Alex H Gifford; Julie L Sanville; Meghana Sathe; Sonya L Heltshe; Christopher H Goss
Journal:  Pediatr Pulmonol       Date:  2021-04-26

4.  Toward Realizing the Full Potential of Registries in Interstitial Lung Disease.

Authors:  Michael T Durheim
Journal:  Ann Am Thorac Soc       Date:  2020-12

Review 5.  Toward Better Understanding of Pediatric Feeding Disorder: A Proposed Framework for Patient Characterization.

Authors:  William G Sharp; Alan Silverman; Joan C Arvedson; Nancy F Bandstra; Elizabeth Clawson; Rashelle C Berry; Barbara O McElhanon; Alison M Kozlowski; Mitchell Katz; Valerie M Volkert; Praveen S Goday; Colleen T Lukens
Journal:  J Pediatr Gastroenterol Nutr       Date:  2022-06-10       Impact factor: 3.288
  5 in total

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