Literature DB >> 28910520

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

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

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.
© 2017 Wiley Periodicals, Inc.

Entities:  

Keywords:  cystic fibrosis; epidemiology; patient registry; quality improvement; registries

Mesh:

Year:  2017        PMID: 28910520     DOI: 10.1002/ppul.23790

Source DB:  PubMed          Journal:  Pediatr Pulmonol        ISSN: 1099-0496


  9 in total

1.  A model for building a national, patient-driven database to track contraceptive use in women with rare diseases.

Authors:  Tatiana Josephy; Deena R Loeffler; Molly Pam; Emily M Godfrey
Journal:  J Am Med Inform Assoc       Date:  2022-01-12       Impact factor: 7.942

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.  Lessons learned from hemolytic uremic syndrome registries: recommendations for implementation.

Authors:  Mina Lazem; Abbas Sheikhtaheri; Nakysa Hooman
Journal:  Orphanet J Rare Dis       Date:  2021-05-25       Impact factor: 4.123

4.  Gut microbiota signatures in cystic fibrosis: Loss of host CFTR function drives the microbiota enterophenotype.

Authors:  Pamela Vernocchi; Federica Del Chierico; Alessandra Russo; Fabio Majo; Martina Rossitto; Mariacristina Valerio; Luca Casadei; Antonietta La Storia; Francesca De Filippis; Cristiano Rizzo; Cesare Manetti; Paola Paci; Danilo Ercolini; Federico Marini; Ersilia Vita Fiscarelli; Bruno Dallapiccola; Vincenzina Lucidi; Alfredo Miccheli; Lorenza Putignani
Journal:  PLoS One       Date:  2018-12-06       Impact factor: 3.240

5.  Prognostication and Risk Factors for Cystic Fibrosis via Automated Machine Learning.

Authors:  Ahmed M Alaa; Mihaela van der Schaar
Journal:  Sci Rep       Date:  2018-07-26       Impact factor: 4.379

6.  Albertans for Health Research Network: Form, Fit, and Function.

Authors:  Jananee Rasiah; Elizabeth Manafò; Kiara Krawec; Ingrid Nielssen; Israel Amirav; Emily Cm Macphail; Lise-Anne Lavigne; Sheila Asis
Journal:  J Patient Exp       Date:  2020-06-29

7.  Incidence of thrombotic microangiopathies in Quebec: insight from a laboratory centralizing ADAMTS-13 testing.

Authors:  Clémence Merlen; Emmanuelle Pépin; Ousmane Barry; Anik Cormier; Caroline Dubois; Anne-Laure Lapeyraque; Stéphan Troyanov; Georges-Etienne Rivard; Arnaud Bonnefoy
Journal:  Orphanet J Rare Dis       Date:  2022-08-04       Impact factor: 4.303

Review 8.  Establishing Patient Registries for Rare Diseases: Rationale and Challenges.

Authors:  Vanessa Boulanger; Marissa Schlemmer; Suzanne Rossov; Allison Seebald; Pamela Gavin
Journal:  Pharmaceut Med       Date:  2020-06

9.  Cystic fibrosis in South Africa: spectrum of disease and determinants of outcome.

Authors:  Marco Zampoli; Janine Verstraete; Marlize Frauendorf; Reshma Kassanjee; Lesley Workman; Brenda M Morrow; Heather J Zar
Journal:  ERJ Open Res       Date:  2021-08-02
  9 in total

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