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The EMBARC European Bronchiectasis Registry: protocol for an international observational study

2016-01Journal article Open access
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dc.contributor.authorChalmers, J.
dc.contributor.authorAliberti, S.
dc.contributor.authorPolverino, E.
dc.contributor.authorVendrell, M.
dc.contributor.authorCrichton, M.
dc.contributor.authorLoebinger, M.
dc.contributor.authorDimakou, K.
dc.contributor.authorClifton, I.
dc.contributor.authorvan der Eerden, M.
dc.contributor.authorRohde, G.
dc.contributor.authorMurris-Espin, M.
dc.contributor.authorMasefield, S.
dc.contributor.authorGerada, E.
dc.contributor.authorShteinberg, M.
dc.contributor.authorRingshausen, F.
dc.contributor.authorHaworth, C.
dc.contributor.authorBoersma, W.
dc.contributor.authorRademacher, J.
dc.contributor.authorHill, A.
dc.contributor.authorAksamit, T.
dc.contributor.authorO'Donnell, A.
dc.contributor.authorMorgan, L.
dc.contributor.authorMilenkovic, B.
dc.contributor.authorTramma, L.
dc.contributor.authorNeves, J.
dc.contributor.authorMenendez, R.
dc.contributor.authorPaggiaro, P.
dc.contributor.authorBotnaru, V.
dc.contributor.authorSkrgat, S.
dc.contributor.authorWilson, R.
dc.contributor.authorGoeminne, P.
dc.contributor.authorDe Soyza, A.
dc.contributor.authorWelte, T.
dc.contributor.authorTorres, A.
dc.contributor.authorElborn, J.
dc.contributor.authorBlasi, F.
dc.date.accessioned2017-06-26T15:37:48Z
dc.date.available2017-06-26T15:37:48Z
dc.date.issued2016-01
dc.description.abstractBronchiectasis is one of the most neglected diseases in respiratory medicine. There are no approved therapies and few large-scale, representative epidemiological studies. The EMBARC (European Multicentre Bronchiectasis Audit and Research Collaboration) registry is a prospective, pan-European observational study of patients with bronchiectasis. The inclusion criterion is a primary clinical diagnosis of bronchiectasis consisting of: 1) a clinical history consistent with bronchiectasis; and 2) computed tomography demonstrating bronchiectasis. Core exclusion criteria are: 1) bronchiectasis due to known cystic fibrosis; 2) age <18 years; and 3) patients who are unable or unwilling to provide informed consent. The study aims to enrol 1000 patients by April 2016 across at least 20 European countries, and 10 000 patients by March 2020. Patients will undergo a comprehensive baseline assessment and will be followed up annually for up to 5 years with the goal of providing high-quality longitudinal data on outcomes, treatment patterns and quality of life. Data from the registry will be available in the form of annual reports. and will be disseminated in conference presentations and peer-reviewed publications. The European Bronchiectasis Registry aims to make a major contribution to understanding the natural history of the disease, as well as guiding evidence-based decision making and facilitating large randomised controlled trials.pt_PT
dc.description.versioninfo:eu-repo/semantics/publishedVersionpt_PT
dc.identifier.citationERJ Open Res. 2016 Jan 20;2(1). pii: 00081-2015. eCollection 2016 Janpt_PT
dc.identifier.doi10.1183/23120541.00081-2015pt_PT
dc.identifier.issn2312-0541
dc.identifier.urihttp://hdl.handle.net/10400.16/2127
dc.language.isoengpt_PT
dc.peerreviewedyespt_PT
dc.publisherEuropean Respiratory Societypt_PT
dc.relation.publisherversionhttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC5005162/pdf/00081-2015.pdfpt_PT
dc.titleThe EMBARC European Bronchiectasis Registry: protocol for an international observational studypt_PT
dc.typejournal article
dspace.entity.typePublication
oaire.citation.conferencePlaceEnglandpt_PT
oaire.citation.issue1pt_PT
oaire.citation.startPage00081-2015pt_PT
oaire.citation.titleERJ Open Researchpt_PT
oaire.citation.volume2pt_PT
rcaap.rightsopenAccesspt_PT
rcaap.typearticlept_PT

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