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Patient Registries in Idiopathic Pulmonary Fibrosis

dc.contributor.authorCulver, Daniel A.
dc.contributor.authorBehr, Jurgen
dc.contributor.authorBelperio, John A.
dc.contributor.authorCorte, Tamera J.
dc.contributor.authorde Andrade, Joao A.
dc.contributor.authorFlaherty, Kevin R.
dc.contributor.authorGulati, Mridu
dc.contributor.authorHuie, Tristan J.
dc.contributor.authorLancaster, Lisa H.
dc.contributor.authorRoman, Jesse
dc.contributor.authorRyerson, Christopher
dc.contributor.authorKim, Hyun J.
dc.identifier.citationAm J Respir Crit Care Med Vol 200, Iss 2, pp 160–167, Jul 15, 2019 Copyright©2019 by the American Thoracic Society Originally Published in Press as DOI: 10.1164/rccm.201902-0431CI on April 29, 2019en_US
dc.description.abstractOver 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.en_US
dc.publisherAmerican Journal of Respiratory and Critical Care Medicineen_US
dc.rightsCreative Commons Attribution Non-Commercial No Derivatives License 4.0
dc.subjectInterstitial lung diseasesen_US
dc.subjectObservational studyen_US
dc.subjectPulmonray fibrosisen_US
dc.subject.lcshPulmonary fibrosisen_US
dc.titlePatient Registries in Idiopathic Pulmonary Fibrosisen_US

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