ArticleBMJ open2021
Study protocol: the ear-nose-throat (ENT) prospective international cohort of patients with primary ciliary dyskinesia (EPIC-PCD).
Article in BMJ open, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT04611516 (The Ear-Nose-Throat), which is not on this map. Cited by 10 papers.
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.
The Ear-Nose-Throat (ENT) Prospective International Cohort of PCD Patients (EPIC-PCD)
Who cites it
10 citing papers in PubMed, 25 citations in OpenAlex.
- Definition of sinonasal and otological exacerbation in patients with primary ciliary dyskinesia: an expert consensus.ERJ open research · 2024Article
- Priorities and barriers for research related to primary ciliary dyskinesia.ERJ open research · 2024Article
- Association between upper and lower respiratory disease among patients with primary ciliary dyskinesia: an international study.ERJ open research · 2024Article
- Lack of Correlation of Sinonasal and Otologic Reported Symptoms With Objective Measurements Among Patients With Primary Ciliary Dyskinesia: An International Study.Clinical and experimental otorhinolaryngology · 2023Article
- Ear and upper airway clinical outcome measures for use in primary ciliary dyskinesia research: a scoping review.European respiratory review : an official journal of the European Respiratory Society · 2023Article
- Sinonasal disease among patients with primary ciliary dyskinesia: an international study.ERJ open research · 2023Article
- ERS International Congress 2022: highlights from the Paediatrics Assembly.ERJ open research · 2023Review
- ERS International Congress 2022: highlights from the Epidemiology and Environment Assembly.ERJ open research · 2023Article
- Otological Manifestations in Adults with Primary Ciliary Dyskinesia: A Controlled Radio-Clinical Study.Journal of clinical medicine · 2022Article
- Respiratory symptoms of Swiss people with primary ciliary dyskinesia.ERJ open research · 2022Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
26 authors at 18 institutions in 13 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
introductionPrimary ciliary dyskinesia (PCD) is a rare, genetic, multiorgan disease with an estimated prevalence of 1 in 10 000. It affects mainly the upper and lower airways due to impaired mucociliary clearance. Almost all patients have sinonasal or otologic (ear-nose-throat, ENT) problems, although the ENT clinical phenotype may present great variability. Despite that, data on PCD ENT manifestations are scarce and based on small single-centre studies. To date, we know little about the spectrum and severity of PCD ENT disease, its association with lung disease, its course over life and its determinants of prognosis.This study protocol describes the aims and methods of the first prospective, observational, multinational cohort study focusing on ENT disease in patients with PCD. METHODS AND ANALYSIS: The ENT prospective international cohort of patients with PCD (EPIC-PCD) is a prospective standardised observational clinical cohort set up as a multinational multicentre study, embedded into routine patient care. It aims to longitudinally characterise ENT disease in patients with PCD and its association with lung disease, and to identify determinants of its prognosis. Patients of all ages, diagnosed with PCD who undergo an ENT clinical assessment at least once a year at one of the participating centres will be invited to participate. Collected data include diagnostic test results, results of ENT examinations, lung function measurements, information on management of ENT disease and patient-reported data on clinical symptoms and health-related quality of life (QoL). Data are collected using the standardised PCD-specific FOLLOW-PCD form and the validated QoL-PCD questionnaire. ETHICS AND DISSEMINATION: The study has been reviewed and approved by the Human Research Ethics Committees at all participating centres, based on local legislation. The results of the study will be published in scientific journals, presented at scientific conferences and disseminated to participants and national patient organisations.
trial registrationNCT04611516.
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