Patient Registries in Idiopathic Pulmonary Fibrosis.
Publication/Presentation Date
7-15-2019
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.
Volume
200
Issue
2
First Page
160
Last Page
167
ISSN
1535-4970
Published In/Presented At
Culver, D. A., Behr, J., Belperio, J. A., Corte, T. J., de Andrade, J. A., Flaherty, K. R., Gulati, M., Huie, T. J., Lancaster, L. H., Roman, J., Ryerson, C. J., & Kim, H. J. (2019). Patient Registries in Idiopathic Pulmonary Fibrosis. American journal of respiratory and critical care medicine, 200(2), 160–167. https://doi.org/10.1164/rccm.201902-0431CI
Disciplines
Business Administration, Management, and Operations | Health and Medical Administration | Management Sciences and Quantitative Methods
PubMedID
31034241
Department(s)
Administration and Leadership
Document Type
Article