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

Research output: Contribution to journalArticlepeer-review

18 Scopus citations


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.

Original languageEnglish (US)
Pages (from-to)160-167
Number of pages8
JournalAmerican journal of respiratory and critical care medicine
Issue number2
StatePublished - Jul 15 2019

PubMed: MeSH publication types

  • Journal Article

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