ArticleAnnals of the American Thoracic Society2020
The Pulmonary Fibrosis Foundation Patient Registry. Rationale, Design, and Methods.
Article in Annals of the American Thoracic Society, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT07512687 (Impact of Ambulatory Oxygen Delivery on Real-world Activity and Quality-of-life in Patients With Interstitial Lung Disease), which is not on this map. Cited by 36 papers.
What it found
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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.
Impact of Ambulatory Oxygen Delivery on Real-world Activity and Quality-of-life in Patients With Interstitial Lung Disease (ILD) and Chronic Obstructive Pulmonary Disease (COPD)
Who cites it
36 citing papers in PubMed, 74 citations in OpenAlex.
- External Control Arms in Idiopathic Pulmonary Fibrosis Using Clinical Trial and Real-World Data Sources.American journal of respiratory and critical care medicine · 2023Trial
- Safety and tolerability of nintedanib in patients with progressive fibrosing interstitial lung diseases: data from the randomized controlled INBUILD trial.Respiratory research · 2022Trial
- Performance of age-adjusted whole genome sequencing telomere length in idiopathic pulmonary fibrosis.American journal of respiratory and critical care medicine · 2026Article
- Real-world evidence on hospitalization, infection, and vascular outcomes among interstitial lung disease subtypes.Respiratory medicine and research · 2026Article
- PCSK6 and clinical outcomes in the Pulmonary Fibrosis Foundation Patient Registry.Respiratory research · 2026Article
- Lung cancer screening with AI can discover cures for many early diseases. A public utility can make sure it happens.Frontiers in oncology · 2026Article
- Building Real-World Evidence Infrastructure to Improve Health and Healthcare in the United States: Part I-Coordinated Registry Networks and Systemic Coordinated Inter-Organizational Networks.International journal of translational medical research and public health · 2025Article
- Reply to Borrás-BlascoAnnals of the American Thoracic Society · 2025Article
- Supplemental Oxygen Payments and Equipment Utilization in a Low-Income Population With Interstitial Lung Disease or COPD.CHEST pulmonary · 2025Article
- Associations of interstitial lung disease subtype and CT pattern with lung function and survival.Thorax · 2025Article
- Prognostic Impact of Quantitative CT Disease Extent and Pattern in Hypersensitivity Pneumonitis.medRxiv : the preprint server for health sciences · 2025Article
- Rare variants and survival of patients with idiopathic pulmonary fibrosis: analysis of a multicentre, observational cohort study with independent validation.The Lancet. Respiratory medicine · 2025Observational
- Perspectives of people living with idiopathic pulmonary fibrosis: a qualitative and quantitative study.BMC pulmonary medicine · 2025Article
- Article
- Demographic and Clinical Factors Associated With Diagnostic Confidence in Interstitial Lung Disease: Findings From the Pulmonary Fibrosis Foundation Patient Registry.CHEST pulmonary · 2024Article
- Impact of Pirfenidone on Patient-Reported Outcomes in Patients With Idiopathic Pulmonary Fibrosis From the Pulmonary Fibrosis Foundation Patient Registry.CHEST pulmonary · 2024Article
- Design and baseline characteristics of the ILD-PRO registry in patients with progressive pulmonary fibrosis.BMC pulmonary medicine · 2024Article
- The Analysis of Proteomics by Machine Learning in Separating Idiopathic Pulmonary Fibrosis from Connective Tissue Disease-Interstitial Lung Disease.American journal of respiratory and critical care medicine · 2024Article
- Use of Race-Specific Equations in Pulmonary Function Tests Impedes Potential Eligibility for Care and Treatment of Pulmonary Fibrosis.Annals of the American Thoracic Society · 2024Observational
- A multidimensional classifier to support lung transplant referral in patients with pulmonary fibrosis.The Journal of heart and lung transplantation : the official publication of the International Society for Heart Transplantation · 2024Article
Corrections and comments
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Authors and funding
21 authors at 10 institutions in 1 country.
Funding
Abstract
Detailed understanding of longitudinal behavior, response to therapy, and applicable biomarkers for interstitial lung diseases (ILDs) is lacking. There is a need for a large multicenter registry that provides researchers and clinicians access to well-characterized data not limited to patients with idiopathic pulmonary fibrosis. The Pulmonary Fibrosis Foundation Patient Registry (PFF-PR) is a database that collects baseline and longitudinal demographic and clinical information about patients with ILDs in the United States. The objective of this study is to describe the patient population, data collection process, and opportunities for retrospective and prospective research with the PFF-PR. Individuals 18 years or older who had ILD diagnosed and who were seen at PFF-PR centers who provided informed consent were eligible to participate. Baseline and longitudinal demographic, spirometric, radiographic, morbidity, and mortality data are recorded into a secure electronic data capture system. Starting in 2016, the PFF-PR has collected data on 2,003 patients at 42 clinical sites in the United States. At the time of enrollment, the mean age of participants was 68 years old. Most (62%) of participants were male, and 58% had a positive smoking history. The mean forced vital capacity was 69% predicted, and the mean diffusing capacity of the lung for carbon monoxide was 43% predicted. Forty-one percent of patients were using supplemental oxygen, and 39% were on antifibrotic therapy. Reasons for attrition were mostly death or transplant, with low rates of loss to follow-up or withdrawal. The PFF-PR is a large multicenter United States-based registry that provides researchers and clinicians access to well-characterized ILD patient data.
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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.