ArticleEuropean clinical respiratory journal2016
Idiopathic pulmonary fibrosis in Sweden: report from the first year of activity of the Swedish IPF-Registry.
Article in European clinical respiratory journal, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 28 papers, 3 of them syntheses that pooled it.
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Who cites it
28 citing papers in PubMed, 3 syntheses or guidelines pooled it.
- Health-related quality of life of patients with idiopathic pulmonary fibrosis: a systematic review and meta-analysis.European respiratory review : an official journal of the European Respiratory Society · 2020Pooled it
- The Burden of Illness of Idiopathic Pulmonary Fibrosis: A Comprehensive Evidence Review.PharmacoEconomics · 2018Pooled it
- The Importance of Sex Stratification in Autoimmune Disease Biomarker Research: A Systematic Review.Frontiers in immunology · 2018Pooled it
- Idiopathic Pulmonary Fibrosis update, comparing the Australasian Interstitial Lung Disease Registry to the Australian Idiopathic Pulmonary Fibrosis Registry.Internal medicine journal · 2026Article
- Diagnostic Approaches for Idiopathic Pulmonary Fibrosis.Tuberculosis and respiratory diseases · 2024Article
- Russian Registry of Idiopathic Pulmonary Fibrosis: Clinical Features, Treatment Management, and Outcomes.Life (Basel, Switzerland) · 2023Article
- Distal Lung Microenvironment Triggers Release of Mediators Recognized as Potential Systemic Biomarkers for Idiopathic Pulmonary Fibrosis.International journal of molecular sciences · 2021Article
- Baseline characteristics and survival of patients of idiopathic pulmonary fibrosis: a longitudinal analysis of the Swedish IPF Registry.Respiratory research · 2021Article
- Idiopathic pulmonary fibrosis in the UK: analysis of the British Thoracic Society electronic registry between 2013 and 2019.ERJ open research · 2021Article
- The Pulmonary Fibrosis Foundation Patient Registry. Rationale, Design, and Methods.Annals of the American Thoracic Society · 2020Article
- The Swedish National Airway Register (SNAR): development, design and utility to date.European clinical respiratory journal · 2020Article
- ILD-specific health-related quality of life in systemic sclerosis-associated ILD compared with IPF.BMJ open respiratory research · 2020Article
- The European MultiPartner IPF registry (EMPIRE): validating long-term prognostic factors in idiopathic pulmonary fibrosis.Respiratory research · 2020Article
- Validation of the King's Brief Interstitial Lung Disease questionnaire in Idiopathic Pulmonary Fibrosis.BMC pulmonary medicine · 2019Article
- Management of Idiopathic Pulmonary Fibrosis.The Annals of pharmacotherapy · 2019Review
- Gender differences at presentation of idiopathic pulmonary fibrosis in Sweden.BMC pulmonary medicine · 2019Article
- Longitudinal clinical outcomes in a real-world population of patients with idiopathic pulmonary fibrosis: the PROOF registry.Respiratory research · 2019Observational
- Demographics and survival of patients with idiopathic pulmonary fibrosis in the FinnishIPF registry.ERJ open research · 2019Article
- Demographic and clinical profile of idiopathic pulmonary fibrosis patients in Spain: the SEPAR National Registry.Respiratory research · 2019Observational
- Epidemiology of Pulmonary Fibrosis: A Cohort Study Using Healthcare Data in Sweden.Pulmonary therapy · 2019Article
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Authors and funding
6 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundIdiopathic pulmonary fibrosis (IPF) is an emerging problem in the western world, being related to increasing age and implying significant costs for the diagnosis and management of affected patients. The epidemiology of IPF is not well understood.
methodsTo allow estimates of the problem and eventually to evaluate quality of the care of IPF patients in Sweden, a national IPF Registry was started in the autumn of 2014. Data on criteria used to diagnose IPF, demographics, lung function, and quality of life (measured with the King's Brief Interstitial Lung Disease Questionnaire, K-BILD) were reported directly to the registry, based at the coordinating centre (Karolinska University Hospital, Stockholm, Sweden) via a web-based platform.
resultsDuring the first year, the registry was implemented in 11 (33%) of the 33 respiratory units in the country. Seventy-one patients were registered between October 2014 and October 2015, 50 (70.4%) males and 21 (29.6%) females. Median age was 70 (range 47-86). The mean K-BILD score at the first inclusion in the registry was 54.3+9.5.
conclusionsThe main features of IPF patients in this first Swedish cohort were consistent with data published in the literature in main multinational randomized controlled trials. The K-BILD questionnaire showed that quality of life of patients with IPF and their perception of the disease are quite poor at the time of inclusion in the registry.
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