Evidence map›Paper›PMID 39971593›Full record

Observational studyBMJ open respiratory research2025

Idiopathic pulmonary fibrosis in the UK: findings from the British Thoracic Society UK Idiopathic Pulmonary Fibrosis Registry.

Ahmed Fahim, Maria Loughenbury, Iain Stewart, Sarah Agnew, Howard Almond, Leo Casimo, Nazia Chaudhuri, Sophie V Fletcher, Sarah Haney, Ling-Pei Ho and 5 more

Abstract readObservational StudyMulticenter Study
In one paragraph

Observational study in BMJ open respiratory research, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

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.

2 · The registry

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.

3 · Its place in the literature

Who cites it

1 citing paper in PubMed.

  1. Observational
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

15 authors.

Ahmed FahimNew Cross Hospital, The Royal Wolverhampton NHS Trust, Wolverhampton, UK.ORCID http://orcid.org/0000-0003-3253-7438
Maria LoughenburyBritish Thoracic Society, London, UK maria.loughenbury@brit-thoracic.org.uk.ORCID http://orcid.org/0009-0007-2415-7415
Iain StewartNational Heart and Lung Institute, NIHR Imperial Biomedical Research Centre, Imperial College London, London, UK.ORCID http://orcid.org/0000-0002-1340-2688
Sarah AgnewLiverpool Interstitial Lung Disease Service, Aintree Hospital, Liverpool University Hospitals NHS Foundation Trust, Liverpool, UK.
Howard AlmondBritish Thoracic Society, London, UK.
Leo CasimoSarcoidosisUK, London, UK.
Nazia ChaudhuriSchool of Medicine, Department of Life and Health Sciences, Ulster University, Northern Ireland, UK.
Sophie V FletcherUniversity Hospital of Southampton NHS Foundation Trust, Southampton, UK.
Sarah HaneyNorthumbria Healthcare NHS Foundation Trust, Ashington, UK.
Ling-Pei HoMRC Translational Immune Discovery Unit, Weatherall Institute of Molecular Medicine, University of Oxford, Oxford, UK.ORCID http://orcid.org/0000-0001-8319-301X
Clare HodkinsonAction for Pulmonary Fibrosis, Peterborough, UK.
Paul MinnisAntrim Area Hospital, Northern Health and Social Care Trust, Antrim, UK.
Evelyn PalmerRoyal Victoria Infirmary, Newcastle Hospitals NHS Foundation Trust, Newcastle upon Tyne, UK.
Andrew M WilsonNorwich Medical School, University of East Anglia, Norwich, UK.
British Thoracic Society

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

objectivesIdiopathic pulmonary fibrosis (IPF) is a progressive interstitial lung disease (ILD) and the most common idiopathic interstitial pneumonia. The UK IPF Registry was established in 2013 to collect data pertaining to clinical features, therapeutic approaches and outcomes. From February 2023, the Registry expanded to include any ILD with evidence of fibrosis.

designThe UK IPF Registry is a national, multicentre observational registry, including both prospective and retrospective data of patients with IPF in secondary or tertiary care. Cases eligible for inclusion were those with a diagnosis of IPF, presenting at participating centres from January 2013.

resultsBetween January 2013 and February 2023, 5052 IPF cases were registered from 64 participating centres. There was a male preponderance (77.8%) with mean±SD age of 74±8.1 years, 66% were ex-smokers and 76% had at least one comorbidity. Over a third (36.7%) experienced symptoms for more than 24 months prior to their first clinic visit. The majority of cases were discussed at a multidisciplinary team (MDT) meeting and the most common radiological patterns at presentation were probable (54.6%) and definite (42.7%) usual interstitial pneumonia. There was a reduction in surgical lung biopsies from 14% in 2013 to 5.5% in 2022. Antifibrotic therapy prescription rose from 36.0% in 2013 to 55.9% in 2023. The use of nintedanib (approved by National Institute of Clinical Excellence in January 2016) rose from 6.7% in 2013 to 31.5% in 2022 and pirfenidone (approved in April 2013) was initially used in around a third of cases before dropping to between 16.8% and 24.9% after nintedanib was approved.

conclusionThese data reflect clinical practice across the UK and it is intended the data will have a role in informing the future of IPF care and providing a model for benchmarking, ultimately increasing knowledge and improving clinical care for this devastating disease.

Indexed as

Idiopathic Pulmonary FibrosisAgedAged, 80 and overFemaleHumansIndolesMaleMiddle AgedProspective StudiesPyridonesRegistriesRetrospective StudiesUnited KingdomIndolesnintedanibpirfenidonePyridonesIdiopathic Pulmonary FibrosisInterstitial Fibrosis

Identifiers

PMID39971593
PMCPMC11840905

What OpenQuestion holds

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Registered trials

None linked

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.