ReviewAmerican journal of respiratory and critical care medicine2019
Patient Registries in Idiopathic Pulmonary Fibrosis.
Review in American journal of respiratory and critical care medicine, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 35 papers.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
35 citing papers in PubMed.
- Efficacy and safety of nintedanib in patients with advanced idiopathic pulmonary fibrosis.BMC pulmonary medicine · 2020Trial
- The impact of palliative care on quality of life, anxiety, and depression in idiopathic pulmonary fibrosis: a randomized controlled pilot study.Respiratory research · 2020Trial
- Design of a phase II randomised, double-blind, placebo-controlled, dose-finding trial of BI 1819479 in patients with idiopathic pulmonary fibrosis.ERJ open research · 2026Article
- Hospitalisations in patients with idiopathic pulmonary fibrosis: insights from the IPF-PRO Registry and EMPIRE Registry.ERJ open research · 2026Article
- Racial, Ethnic, Sex, and Gender Equity for Inclusive Interstitial Lung Disease Research: An Official American Thoracic Society Research Statement.American journal of respiratory and critical care medicine · 2025Review
- Idiopathic pulmonary fibrosis in the UK: findings from the British Thoracic Society UK Idiopathic Pulmonary Fibrosis Registry.BMJ open respiratory research · 2025Observational
- Design and baseline characteristics of the ILD-PRO registry in patients with progressive pulmonary fibrosis.BMC pulmonary medicine · 2024Article
- Economic Burden of Idiopathic Pulmonary Fibrosis in Spain: A Prospective Real-World Data Study (OASIS Study).PharmacoEconomics · 2023Observational
- Russian Registry of Idiopathic Pulmonary Fibrosis: Clinical Features, Treatment Management, and Outcomes.Life (Basel, Switzerland) · 2023Article
- A data set for the design and implementation of the upper limb disability registry.Journal of education and health promotion · 2023Article
- Clinical management and acute exacerbations in patients with idiopathic pulmonary fibrosis in Spain: results from the OASIS study.Respiratory research · 2022Article
- Generalizable EHR-R-REDCap pipeline for a national multi-institutional rare tumor patient registry.JAMIA open · 2022Article
- Design and rationale of ProSar, the first Danish sarcoidosis registry.Sarcoidosis, vasculitis, and diffuse lung diseases : official journal of WASOG · 2022Article
- Article
- Outcomes of Idiopathic Pulmonary Fibrosis Improve with Obesity: A Rural Appalachian Experience.Southern medical journal · 2021Observational
- Evaluation of Patients with Fibrotic Interstitial Lung Disease: Preliminary results from the Turk-UIP Study.Turkish thoracic journal · 2021Article
- Differences in Baseline Characteristics and Access to Treatment of Newly Diagnosed Patients With IPF in the EMPIRE Countries.Frontiers in medicine · 2021Article
- The Pulmonary Fibrosis Foundation Patient Registry. Rationale, Design, and Methods.Annals of the American Thoracic Society · 2020Article
- Big Data and Atrial Fibrillation: Current Understanding and New Opportunities.Journal of cardiovascular translational research · 2020Review
- Toward Realizing the Full Potential of Registries in Interstitial Lung Disease.Annals of the American Thoracic Society · 2020Article
Corrections and comments
- Commented on byReply to Nett2020
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- Commented on byReply to Sanyal2020
Authors and funding
12 authors.
Funding
No grant is acknowledged in the PubMed record.
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.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.