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dc.contributor.otherProducción Científica UCH 2021-
dc.contributor.otherUCH. Departamento de Ciencias Biomédicas-
dc.creatorGoutaki, Myrofora.-
dc.creatorLam, Yin-Ting.-
dc.creatorAlexandru, Mihaela.-
dc.creatorAnagiotos, Andreas.-
dc.creatorArmengot, Miguel.-
dc.creatorBequignon, Emilie.-
dc.creatorReula Martín, Ana.-
dc.identifier.citationGoutaki, M., Lam, Y.T., Alexandru, M., Anagiotos, A., Armengot, M., Bequignon, E., et al. (2021). Study protocol: the ear-nose-throat (ENT) prospective international cohort of patients with primary ciliary dyskinesia (EPIC-PCD). BMJ open, vol. 11, i. 10 (13 may.), art. e051433. DOI: https://doi.org/10.1136/bmjopen-2021-051433-
dc.identifier.issn2044-6055 (Electrónico)-
dc.descriptionEste artículo se encuentra disponible en la siguiente URL: https://bmjopen.bmj.com/content/bmjopen/11/10/e051433.full.pdf-
dc.descriptionEn este artículo de investigación también participan: Mieke Boon, Andrea Burgess, Andre Coste, Nagehan Emiralioglu, Ela Erdem, Eric G. Haarman, Amanda Harris, Sara-Lynn Hool, Bulent Karadag, Sookyung Kim, Philipp Latzin, Natalie Lorent, Ugur Ozcelik, Jobst Roehmel, Christine van Gogh, Panayiotis Yiallouros, Soeren Marian Zappe, On behalf of the EPIC-PCD team, Jean Francois Papon.-
dc.description.abstractIntroduction Primary 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.-
dc.relationEste trabajo de investigación fue financiado por una beca de la Swiss National Science Foundation (SNFPZ00P3_185923).-
dc.relation.ispartofBMJ Open, vol. 11, n. 10 (13 may. 2021)-
dc.subjectKartagener, Síndrome de.-
dc.subjectKartagener's syndrome.-
dc.subjectPediatric otolaryngology.-
dc.subjectOtorrinolaringología pediátrica.-
dc.subjectAparato respiratorio - Enfermedades en los niños.-
dc.subjectPrimary ciliary dyskinesia.-
dc.subjectDisquinesia ciliar, Síndrome de.-
dc.subjectRespiratory organs - Diseases in children.-
dc.subjectChronic diseases in children.-
dc.subjectEnfermedades crónicas en los niños.-
dc.titleStudy protocol : the ear-nose-throat (ENT) prospective international cohort of patients with primary ciliary dyskinesia (EPIC-PCD)-
dc.title.alternativeThe ear-nose-throat (ENT) prospective international cohort of patients with primary ciliary dyskinesia (EPIC-PCD)-
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