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Patient Registries In Idiopathic Pulmonary Fibrosis., Daniel A. Culver, Jürgen Behr, John A. Belperio, Tamera J. Corte, Joao A. De Andrade, Kevin R. Flaherty, Mridu Gulati, Tristan J. Huie, Lisa H. Lancaster, Jesse Roman, Christopher J. Ryerson, Hyun J. Kim

Division of Pulmonary and Critical Care Medicine Faculty Papers

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 …