Observational studyThe European respiratory journal2017
The international primary ciliary dyskinesia cohort (iPCD Cohort): methods and first results.
Observational study in The European respiratory journal, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT03517865 (International Primary Ciliary Dyskinesia Cohort), which is not on this map. Cited by 42 papers, 2 of them syntheses that pooled it.
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.
International Primary Ciliary Dyskinesia Cohort
Who cites it
42 citing papers in PubMed, 2 syntheses or guidelines pooled it, 100 citations in OpenAlex.
- A systematic review and evidence assessment of monogenic gene-disease relationships in human male infertility.Frontiers in endocrinology · 2025Pooled it
- Factors influencing harmonized health data collection, sharing and linkage in Denmark and Switzerland: A systematic review.PloS one · 2019Pooled it
- Primary Ciliary Dyskinesia Caused by Homozygous DNAAF1 Mutations Resulting from a Consanguineous Marriage: A Case Report from Japan.Internal medicine (Tokyo, Japan) · 2024Article
- Priorities and barriers for research related to primary ciliary dyskinesia.ERJ open research · 2024Article
- Estimates of primary ciliary dyskinesia prevalence: a scoping review.ERJ open research · 2024Article
- Infertility and pregnancy outcomes among adults with primary ciliary dyskinesia.Human reproduction open · 2024Article
- Outcomes of Endoscopic Sinus Surgery for Chronic Rhinosinusitis in Adults with Primary Ciliary Dyskinesia.International archives of otorhinolaryngology · 2023Article
- Lung function from school age to adulthood in primary ciliary dyskinesia.The European respiratory journal · 2022Article
- Observational
- Translation of the quality of life questionnaire for primary ciliary dyskinesia (QOL-PCD) into Hebrew: The Israeli experience.Pediatric pulmonology · 2022Article
- Respiratory symptoms of Swiss people with primary ciliary dyskinesia.ERJ open research · 2022Article
- Chronic airway disease in primary ciliary dyskinesia-spiced with geno-phenotype associations.American journal of medical genetics. Part C, Seminars in medical genetics · 2022Review
- Study protocol: the ear-nose-throat (ENT) prospective international cohort of patients with primary ciliary dyskinesia (EPIC-PCD).BMJ open · 2021Article
- Lower airway clinical outcome measures for use in primary ciliary dyskinesia research: a scoping review.ERJ open research · 2021Article
- Properties of Non-Aminoglycoside Compounds Used to Stimulate Translational Readthrough of PTC Mutations in Primary Ciliary Dyskinesia.International journal of molecular sciences · 2021Article
- Respiratory Distress in the Newborn with Primary Ciliary Dyskinesia.Children (Basel, Switzerland) · 2021Review
- Comparison of ciliary beat frequencies at different temperatures in young adults.ERJ open research · 2020Article
- Motile ciliopathies.Nature reviews. Disease primers · 2020Review
- Late Diagnosis of Infants with PCD and Neonatal Respiratory Distress.Journal of clinical medicine · 2020Article
- Access to medicines for rare diseases: beating the drum for primary ciliary dyskinesia.ERJ open research · 2020Article
Corrections and comments
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Authors and funding
31 authors at 18 institutions in 14 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Data on primary ciliary dyskinesia (PCD) epidemiology is scarce and published studies are characterised by low numbers. In the framework of the European Union project BESTCILIA we aimed to combine all available datasets in a retrospective international PCD cohort (iPCD Cohort).We identified eligible datasets by performing a systematic review of published studies containing clinical information on PCD, and by contacting members of past and current European Respiratory Society Task Forces on PCD. We compared the contents of the datasets, clarified definitions and pooled them in a standardised format.As of April 2016 the iPCD Cohort includes data on 3013 patients from 18 countries. It includes data on diagnostic evaluations, symptoms, lung function, growth and treatments. Longitudinal data are currently available for 542 patients. The extent of clinical details per patient varies between centres. More than 50% of patients have a definite PCD diagnosis based on recent guidelines. Children aged 10-19 years are the largest age group, followed by younger children (≤9 years) and young adults (20-29 years).This is the largest observational PCD dataset available to date. It will allow us to answer pertinent questions on clinical phenotype, disease severity, prognosis and effect of treatments, and to investigate genotype-phenotype correlations.
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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.