The EMBARC European Bronchiectasis Registry: protocol for an international observational study
Autor(a) principal: | |
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Data de Publicação: | 2016 |
Outros Autores: | , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , |
Tipo de documento: | Artigo |
Idioma: | eng |
Título da fonte: | Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) |
Texto Completo: | http://hdl.handle.net/10400.16/2127 |
Resumo: | Bronchiectasis 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. |
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The EMBARC European Bronchiectasis Registry: protocol for an international observational studyBronchiectasis 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.European Respiratory SocietyRepositório Científico do Centro Hospitalar Universitário de Santo AntónioChalmers, J.Aliberti, S.Polverino, E.Vendrell, M.Crichton, M.Loebinger, M.Dimakou, K.Clifton, I.van der Eerden, M.Rohde, G.Murris-Espin, M.Masefield, S.Gerada, E.Shteinberg, M.Ringshausen, F.Haworth, C.Boersma, W.Rademacher, J.Hill, A.Aksamit, T.O'Donnell, A.Morgan, L.Milenkovic, B.Tramma, L.Neves, J.Menendez, R.Paggiaro, P.Botnaru, V.Skrgat, S.Wilson, R.Goeminne, P.De Soyza, A.Welte, T.Torres, A.Elborn, J.Blasi, F.2017-06-26T15:37:48Z2016-012016-01-01T00:00:00Zinfo:eu-repo/semantics/publishedVersioninfo:eu-repo/semantics/articleapplication/pdfhttp://hdl.handle.net/10400.16/2127engERJ Open Res. 2016 Jan 20;2(1). pii: 00081-2015. eCollection 2016 Jan2312-054110.1183/23120541.00081-2015info:eu-repo/semantics/openAccessreponame:Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)instname:Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informaçãoinstacron:RCAAP2023-10-20T10:59:08Zoai:repositorio.chporto.pt:10400.16/2127Portal AgregadorONGhttps://www.rcaap.pt/oai/openaireopendoar:71602024-03-19T20:38:22.564094Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) - Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informaçãofalse |
dc.title.none.fl_str_mv |
The EMBARC European Bronchiectasis Registry: protocol for an international observational study |
title |
The EMBARC European Bronchiectasis Registry: protocol for an international observational study |
spellingShingle |
The EMBARC European Bronchiectasis Registry: protocol for an international observational study Chalmers, J. |
title_short |
The EMBARC European Bronchiectasis Registry: protocol for an international observational study |
title_full |
The EMBARC European Bronchiectasis Registry: protocol for an international observational study |
title_fullStr |
The EMBARC European Bronchiectasis Registry: protocol for an international observational study |
title_full_unstemmed |
The EMBARC European Bronchiectasis Registry: protocol for an international observational study |
title_sort |
The EMBARC European Bronchiectasis Registry: protocol for an international observational study |
author |
Chalmers, J. |
author_facet |
Chalmers, J. Aliberti, S. Polverino, E. Vendrell, M. Crichton, M. Loebinger, M. Dimakou, K. Clifton, I. van der Eerden, M. Rohde, G. Murris-Espin, M. Masefield, S. Gerada, E. Shteinberg, M. Ringshausen, F. Haworth, C. Boersma, W. Rademacher, J. Hill, A. Aksamit, T. O'Donnell, A. Morgan, L. Milenkovic, B. Tramma, L. Neves, J. Menendez, R. Paggiaro, P. Botnaru, V. Skrgat, S. Wilson, R. Goeminne, P. De Soyza, A. Welte, T. Torres, A. Elborn, J. Blasi, F. |
author_role |
author |
author2 |
Aliberti, S. Polverino, E. Vendrell, M. Crichton, M. Loebinger, M. Dimakou, K. Clifton, I. van der Eerden, M. Rohde, G. Murris-Espin, M. Masefield, S. Gerada, E. Shteinberg, M. Ringshausen, F. Haworth, C. Boersma, W. Rademacher, J. Hill, A. Aksamit, T. O'Donnell, A. Morgan, L. Milenkovic, B. Tramma, L. Neves, J. Menendez, R. Paggiaro, P. Botnaru, V. Skrgat, S. Wilson, R. Goeminne, P. De Soyza, A. Welte, T. Torres, A. Elborn, J. Blasi, F. |
author2_role |
author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author |
dc.contributor.none.fl_str_mv |
Repositório Científico do Centro Hospitalar Universitário de Santo António |
dc.contributor.author.fl_str_mv |
Chalmers, J. Aliberti, S. Polverino, E. Vendrell, M. Crichton, M. Loebinger, M. Dimakou, K. Clifton, I. van der Eerden, M. Rohde, G. Murris-Espin, M. Masefield, S. Gerada, E. Shteinberg, M. Ringshausen, F. Haworth, C. Boersma, W. Rademacher, J. Hill, A. Aksamit, T. O'Donnell, A. Morgan, L. Milenkovic, B. Tramma, L. Neves, J. Menendez, R. Paggiaro, P. Botnaru, V. Skrgat, S. Wilson, R. Goeminne, P. De Soyza, A. Welte, T. Torres, A. Elborn, J. Blasi, F. |
description |
Bronchiectasis 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. |
publishDate |
2016 |
dc.date.none.fl_str_mv |
2016-01 2016-01-01T00:00:00Z 2017-06-26T15:37:48Z |
dc.type.status.fl_str_mv |
info:eu-repo/semantics/publishedVersion |
dc.type.driver.fl_str_mv |
info:eu-repo/semantics/article |
format |
article |
status_str |
publishedVersion |
dc.identifier.uri.fl_str_mv |
http://hdl.handle.net/10400.16/2127 |
url |
http://hdl.handle.net/10400.16/2127 |
dc.language.iso.fl_str_mv |
eng |
language |
eng |
dc.relation.none.fl_str_mv |
ERJ Open Res. 2016 Jan 20;2(1). pii: 00081-2015. eCollection 2016 Jan 2312-0541 10.1183/23120541.00081-2015 |
dc.rights.driver.fl_str_mv |
info:eu-repo/semantics/openAccess |
eu_rights_str_mv |
openAccess |
dc.format.none.fl_str_mv |
application/pdf |
dc.publisher.none.fl_str_mv |
European Respiratory Society |
publisher.none.fl_str_mv |
European Respiratory Society |
dc.source.none.fl_str_mv |
reponame:Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) instname:Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informação instacron:RCAAP |
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Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informação |
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RCAAP |
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Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) |
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Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) |
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Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) - Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informação |
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