Patient Registries in Idiopathic Pulmonary Fibrosis.

Authors

Daniel A. Culver, Cleveland Clinic
Jürgen Behr, University of Munich; German Center for Lung Research
John A. Belperio, University of California, Los Angeles
Tamera J. Corte, Royal Prince Alfred Hospital; University of Sydney
Joao A. de Andrade, University of Alabama at Birmingham
Kevin R. Flaherty, The University Of Michigan
Mridu Gulati, Yale University School of Medicine
Tristan J. Huie, National Jewish Health
Lisa H. Lancaster, Vanderbilt University Medical Center
Jesse Roman, Thomas Jefferson UniversityFollow
Christopher J. Ryerson, University of British Columbia
Hyun J. Kim, University of Minnesota

Document Type

Article

Publication Date

7-15-2019

Comments

This article has been peer reviewed. It is the author’s final published version in American Journal of Respiratory and Critical Care Medicine, Volume 200, Issue 2, July 20189, Pages 160-167.

The published version is available at https://doi.org/10.1164/rccm.201902-0431CI. Copyright © Culver et al.

Abstract

Over the past decade, several large registries of patients with idiopathic pulmonary fibrosis (IPF) have been established. These registries are collecting a wealth of longitudinal data on thousands of patients with this rare disease. The data collected in these registries will be complementary to data collected in clinical trials because the patient populations studied in registries have a broader spectrum of disease severity and comorbidities and can be followed for a longer period of time. Maintaining the quality and completeness of registry databases presents administrative and resourcing challenges, but it is important to ensuring the robustness of the analyses. Data from patient registries have already helped improve understanding of the clinical characteristics of patients with IPF, the impact that the disease has on their quality of life and survival, and current practices in diagnosis and management. In the future, analyses of biospecimens linked to detailed patient profiles will provide the opportunity to identify biomarkers linked to disease progression, facilitating the development of precision medicine approaches for prognosis and therapy in patients with IPF.

Recommended Citation

Culver, Daniel A.; Behr, Jürgen; Belperio, John A.; Corte, Tamera J.; de Andrade, Joao A.; Flaherty, Kevin R.; Gulati, Mridu; Huie, Tristan J.; Lancaster, Lisa H.; Roman, Jesse; Ryerson, Christopher J.; and Kim, Hyun J., "Patient Registries in Idiopathic Pulmonary Fibrosis." (2019). Division of Pulmonary and Critical Care Medicine Faculty Papers. Paper 14.
https://jdc.jefferson.edu/pulmcritcarefp/14

Creative Commons License

This work is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 4.0 License.

PubMed ID

31034241

Language

English