Evidence map›Paper›PMID 41561099›Full record

ArticleERJ open research2026

Primary ciliary dyskinesia: a national expert consensus statement on standards of care.

Evie A Robson, Giulia Spoletini, Amelia Bercusson, Siobhan B Carr, Mary Carroll, Katie Dexter, Lucy Dixon, Claire Hogg, Andrew Jones, Priti Kenia and 8 more

Abstract read
In one paragraph

Article in ERJ open research, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.

0numbers the graph read from it
0cells of the map it votes in
3citing 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

3 citing papers in PubMed.

  1. Article
  2. Review
  3. Article
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

18 authors.

Evie A RobsonPaediatric Primary Ciliary Dyskinesia Management Service, Leeds Centre for Children's Respiratory Medicine, Leeds Teaching Hospital NHS Trust, Leeds, UK.
Giulia SpoletiniAdult Primary Ciliary Dyskinesia Management Service, Department of Respiratory Medicine, Leeds Teaching Hospital NHS Trust, Leeds, UK.ORCID https://orcid.org/0000-0002-5462-0083
Amelia BercussonAdult Primary Ciliary Dyskinesia Management Service, University Hospital Southampton NHS Foundation Trust, Southampton, UK.
Siobhan B CarrPaediatric Primary Ciliary Dyskinesia Management Service, Royal Brompton and Harefield Hospital, Guy's and St Thomas' NHS Foundation Trust, London, UK.ORCID https://orcid.org/0000-0003-0580-2478
Mary CarrollAdult Primary Ciliary Dyskinesia Management Service, University Hospital Southampton NHS Foundation Trust, Southampton, UK.
Katie DexterPCD Support UK, Buckingham, UK.ORCID https://orcid.org/0000-0003-0140-3744
Lucy DixonPCD Support UK, Buckingham, UK.
Claire HoggNHLI, Imperial College London, London, UK.
Andrew JonesHost Defence Unit, Royal Brompton Hospital and Harefield Hospitals, Guy's and St Thomas' NHS Foundation Trust, London, UK.
Priti KeniaPaediatric Primary Ciliary Dyskinesia Management Service, Department of Paediatric Respiratory Medicine, Birmingham Children's Hospital, Birmingham, UK.
Michael LoebingerHost Defence Unit, Royal Brompton Hospital and Harefield Hospitals, Guy's and St Thomas' NHS Foundation Trust, London, UK.
Jane S LucasPrimary Ciliary Dyskinesia Centre, NIHR Biomedical Research Centre, University Hospital Southampton NHS Foundation Trust, Southampton, UK.ORCID https://orcid.org/0000-0001-8701-9975
Eduardo MoyaPaediatric Primary Ciliary Dyskinesia Management Service, Bradford Teaching Hospital NHS Trust, Bradford, UK.
Christopher O'CallaghanPrimary Ciliary Dyskinesia Diagnostic Service, University Hospitals of Leicester, Leicester, UK.
Deepa PatelPrimary Ciliary Dyskinesia Diagnostic Service, University Hospitals of Leicester, Leicester, UK.
Daniel G PeckhamAdult Primary Ciliary Dyskinesia Management Service, Department of Respiratory Medicine, Leeds Teaching Hospital NHS Trust, Leeds, UK.ORCID https://orcid.org/0000-0001-7723-1868
Simon RangeAdult Primary Ciliary Dyskinesia Management Service, Department of Respiratory Medicine, University Hospitals of Leicester, Leicester, UK.
Woolf T WalkerPrimary Ciliary Dyskinesia Centre, NIHR Biomedical Research Centre, University Hospital Southampton NHS Foundation Trust, Southampton, UK.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Primary ciliary dyskinesia (PCD) is a genetically and clinically diverse disorder characterised by loss of normal ciliary function leading to chronic oto-sino pulmonary disease, situs abnormalities and subfertility in men and women. There is limited evidence to support robust guidelines on the management of children and adults with PCD; however, there is a clear clinical need to establish a framework of care for the follow-up of these patients. The European Respiratory Society (ERS) has published consensus statements on diagnostic and treatment approaches in children with PCD, and the BEAT-PCD (Better Experimental Approaches to Treat PCD) network provides guidance on infection prevention and control. This is a national consensus statement to outline a set of standards for the provision of specialist care for children and adults with PCD living in England. A national PCD expert panel made up of specialists working in both paediatric and adult UK highly specialist management services, was established to create a consensus statement on the minimum standards of care for PCD. Using a modified Delphi process, consensus to a statement required at least 80% agreement within the PCD expert panel group. Patient organisation representatives were involved in reviewing the statement and have produced an accompanying layperson summary. We present a consensus statement on 15 standards covering provision of pulmonary, ear, nose and throat, and fertility care, screening for situs abnormalities and transition from paediatric to adult care services. It is targeted at clinicians and allied health professionals managing paediatric and adult patients with PCD, patient organisations and patients and their families.

Identifiers

PMID41561099
PMCPMC12813683

What OpenQuestion holds

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Registered trials

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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.