ArticleBMC pulmonary medicine2023
Study protocol of an international patient-led registry in patients with pulmonary fibrosis using online home monitoring: I-FILE.
Article in BMC pulmonary medicine, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT04304898 (An International Patient-led Registry in Fibrotic Interstitial Lung Diseases Using eHealth Technology), which is not on this map. Cited by 6 papers.
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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.
An International Patient-led Registry in Fibrotic Interstitial Lung Diseases Using eHealth Technology: I-FILE
Who cites it
6 citing papers in PubMed, 7 citations in OpenAlex.
- Holistic Management of Pulmonary Fibrosis: A Comprehensive Review.Medicina (Kaunas, Lithuania) · 2026Review
- Lung Function Course of Patients With Pulmonary Fibrosis After Initiation of Anti-Fibrotic Treatment: Real-World Data From the Dutch National Registry.Respirology (Carlton, Vic.) · 2025Article
- European ILD registry algorithm for self-assessment in interstitial lung diseases (eurILDreg ASA-ILD).PloS one · 2025Article
- Patient-centered care in pulmonary fibrosis: access, anticipate, and act.Respiratory research · 2024Review
- Holistic management of patients with progressive pulmonary fibrosis.Breathe (Sheffield, England) · 2023Review
- Navigating the COVID-19 pandemic: Experiences and self-management approaches adopted by people with interstitial lung disease.Chronic respiratory diseaseArticle
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
10 authors at 8 institutions in 7 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundPulmonary fibrosis (PF) is caused by a heterogeneous group of diseases, with a high inter-individual variability in disease trajectory. Identifying disease progression in patients with PF has impact on clinical management decisions. However, strategies to early identify and predict disease progression for these patients are currently lacking. In this study, we aim to assess long-term FVC change in patients with PF measured with home spirometry, and evaluate the feasibility of a multinational patient-led registry in PF. In addition, we will assess validity of patient-reported outcomes (PROMs) for the different subgroups of patients with PF.
methodsIn this international, prospective, multicenter, observational study, we aim to include 700 patients across seven European countries. Patients will monitor their disease course for a period of two years using an online home monitoring program (I-FILE), which includes home spirometry, pulse oximetry, and PROMs. Results will be directly sent to the hospital via the online application. Patients will be asked to perform daily home spirometry and pulse oximetry in the first three months, followed by once weekly measurements for a period of two years. PROMs will be completed in the online I-FILE application every six months, including the King's brief Interstitial Lung Disease Health Status, The EuroQol five dimensions five-level, Visual Analogue Scales on cough, dyspnea, fatigue and general complaints, Leicester Cough Questionnaire, Fatigue Assessment Scale, Work Productivity and Activity Impairment Questionnaire, Global Rating of Change Scale, and Living with Pulmonary Fibrosis questionnaire. DISCUSSION: This study will provide much needed insights in disease trajectories of the different subgroups of patients with PF. Simultaneously, the I-FILE study will yield valuable information on the use and feasibility of home-based data collection. This international patient-led registry will facilitate trans-border collaboration to further optimize care and research for patients with PF.
trial registrationThe study was registered on the 12th of March 2020 in the International Clinical Trial Registry, www. CLINICALTRIALS: gov ; Identifier: NCT04304898.
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