The EMBARC European Bronchiectasis Registry: protocol for an international observational study.
Identifieur interne : 002332 ( PubMed/Corpus ); précédent : 002331; suivant : 002333The EMBARC European Bronchiectasis Registry: protocol for an international observational study.
Auteurs : James D. Chalmers ; Stefano Aliberti ; Eva Polverino ; Montserrat Vendrell ; Megan Crichton ; Michael Loebinger ; Katerina Dimakou ; Ian Clifton ; Menno Van Der Eerden ; Gernot Rohde ; Marlene Murris-Espin ; Sarah Masefield ; Eleanor Gerada ; Michal Shteinberg ; Felix Ringshausen ; Charles Haworth ; Wim Boersma ; Jessica Rademacher ; Adam T. Hill ; Timothy Aksamit ; Anne O'Donnell ; Lucy Morgan ; Branislava Milenkovic ; Leandro Tramma ; Joao Neves ; Rosario Menendez ; Perluigi Paggiaro ; Victor Botnaru ; Sabina Skrgat ; Robert Wilson ; Pieter Goeminne ; Anthony De Soyza ; Tobias Welte ; Antoni Torres ; J Stuart Elborn ; Francesco BlasiSource :
- ERJ open research [ 2312-0541 ] ; 2016.
Abstract
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.
DOI: 10.1183/23120541.00081-2015
PubMed: 27730179
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<record><TEI><teiHeader><fileDesc><titleStmt><title xml:lang="en">The EMBARC European Bronchiectasis Registry: protocol for an international observational study.</title><author><name sortKey="Chalmers, James D" sort="Chalmers, James D" uniqKey="Chalmers J" first="James D" last="Chalmers">James D. Chalmers</name><affiliation><nlm:affiliation>College of Medicine, University of Dundee, Ninewells Hospital and Medical School, Dundee, UK; These authors contributed equally.</nlm:affiliation></affiliation></author><author><name sortKey="Aliberti, Stefano" sort="Aliberti, Stefano" uniqKey="Aliberti S" first="Stefano" last="Aliberti">Stefano Aliberti</name><affiliation><nlm:affiliation>Dept of Health Science, University of Milan Bicocca, Clinica Pneumologica, AO San Gerardo, Monza, Italy; These authors contributed equally.</nlm:affiliation></affiliation></author><author><name sortKey="Polverino, Eva" sort="Polverino, Eva" uniqKey="Polverino E" first="Eva" last="Polverino">Eva Polverino</name><affiliation><nlm:affiliation>Fundaciò Clìnic, IDIBAPS, CIBERES, Hospital Clinic de Barcelona, Barcelona, Spain; These authors contributed equally.</nlm:affiliation></affiliation></author><author><name sortKey="Vendrell, Montserrat" sort="Vendrell, Montserrat" uniqKey="Vendrell M" first="Montserrat" last="Vendrell">Montserrat Vendrell</name><affiliation><nlm:affiliation>Bronchiectasis Group, Girona Biomedical Research Institute (IDIBGI), Dr Trueta University Hospital, Girona, Spain.</nlm:affiliation></affiliation></author><author><name sortKey="Crichton, Megan" sort="Crichton, Megan" uniqKey="Crichton M" first="Megan" last="Crichton">Megan Crichton</name><affiliation><nlm:affiliation>College of Medicine, University of Dundee, Ninewells Hospital and Medical School, Dundee, UK.</nlm:affiliation></affiliation></author><author><name sortKey="Loebinger, Michael" sort="Loebinger, Michael" uniqKey="Loebinger M" first="Michael" last="Loebinger">Michael Loebinger</name><affiliation><nlm:affiliation>Host Defence Unit, Royal Brompton Hospital, London, UK.</nlm:affiliation></affiliation></author><author><name sortKey="Dimakou, Katerina" sort="Dimakou, Katerina" uniqKey="Dimakou K" first="Katerina" last="Dimakou">Katerina Dimakou</name><affiliation><nlm:affiliation>5th Pulmonary Department, "Sotiria" Chest Hospital, Athens, Greece.</nlm:affiliation></affiliation></author><author><name sortKey="Clifton, Ian" sort="Clifton, Ian" uniqKey="Clifton I" first="Ian" last="Clifton">Ian Clifton</name><affiliation><nlm:affiliation>Leeds Centre for Respiratory Medicine, St James's Hospital, Leeds, UK.</nlm:affiliation></affiliation></author><author><name sortKey="Van Der Eerden, Menno" sort="Van Der Eerden, Menno" uniqKey="Van Der Eerden M" first="Menno" last="Van Der Eerden">Menno Van Der Eerden</name><affiliation><nlm:affiliation>Dept of Pulmonary Medicine, Erasmus MC Rotterdam, Rotterdam, The Netherlands.</nlm:affiliation></affiliation></author><author><name sortKey="Rohde, Gernot" sort="Rohde, Gernot" uniqKey="Rohde G" first="Gernot" last="Rohde">Gernot Rohde</name><affiliation><nlm:affiliation>Dept of Respiratory Medicine, Maastricht University Medical Center, Maastricht, The Netherlands.</nlm:affiliation></affiliation></author><author><name sortKey="Murris Espin, Marlene" sort="Murris Espin, Marlene" uniqKey="Murris Espin M" first="Marlene" last="Murris-Espin">Marlene Murris-Espin</name><affiliation><nlm:affiliation>Pôle des Voies Respiratoires, Hôpital de Larrey, CHU de Toulouse, Toulouse, France.</nlm:affiliation></affiliation></author><author><name sortKey="Masefield, Sarah" sort="Masefield, Sarah" uniqKey="Masefield S" first="Sarah" last="Masefield">Sarah Masefield</name><affiliation><nlm:affiliation>European Lung Foundation, Sheffield, UK.</nlm:affiliation></affiliation></author><author><name sortKey="Gerada, Eleanor" sort="Gerada, Eleanor" uniqKey="Gerada E" first="Eleanor" last="Gerada">Eleanor Gerada</name><affiliation><nlm:affiliation>Dept of Respiratory Medicine, Mater Dei Hospital, Msida, Malta.</nlm:affiliation></affiliation></author><author><name sortKey="Shteinberg, Michal" sort="Shteinberg, Michal" uniqKey="Shteinberg M" first="Michal" last="Shteinberg">Michal Shteinberg</name><affiliation><nlm:affiliation>Pulmonary Institute, Carmel Medical Center, Haifa, Israel.</nlm:affiliation></affiliation></author><author><name sortKey="Ringshausen, Felix" sort="Ringshausen, Felix" uniqKey="Ringshausen F" first="Felix" last="Ringshausen">Felix Ringshausen</name><affiliation><nlm:affiliation>Dept of Respiratory Medicine, Hannover Medical School, Member of the German Centre for Lung Research, Hannover, Germany.</nlm:affiliation></affiliation></author><author><name sortKey="Haworth, Charles" sort="Haworth, Charles" uniqKey="Haworth C" first="Charles" last="Haworth">Charles Haworth</name><affiliation><nlm:affiliation>Cambridge Centre for Lung Infection, Papworth Hospital, Cambridge, UK.</nlm:affiliation></affiliation></author><author><name sortKey="Boersma, Wim" sort="Boersma, Wim" uniqKey="Boersma W" first="Wim" last="Boersma">Wim Boersma</name><affiliation><nlm:affiliation>Dept of Pulmonary Diseases, Medical Centre Alkmaar, Alkmaar, The Netherlands.</nlm:affiliation></affiliation></author><author><name sortKey="Rademacher, Jessica" sort="Rademacher, Jessica" uniqKey="Rademacher J" first="Jessica" last="Rademacher">Jessica Rademacher</name><affiliation><nlm:affiliation>Dept of Respiratory Medicine, Hannover Medical School, Member of the German Centre for Lung Research, Hannover, Germany.</nlm:affiliation></affiliation></author><author><name sortKey="Hill, Adam T" sort="Hill, Adam T" uniqKey="Hill A" first="Adam T" last="Hill">Adam T. Hill</name><affiliation><nlm:affiliation>Royal Infirmary of Edinburgh, University of Edinburgh, Edinburgh, UK.</nlm:affiliation></affiliation></author><author><name sortKey="Aksamit, Timothy" sort="Aksamit, Timothy" uniqKey="Aksamit T" first="Timothy" last="Aksamit">Timothy Aksamit</name><affiliation><nlm:affiliation>Mayo Clinic College of Medicine, Rochester, MN, USA.</nlm:affiliation></affiliation></author><author><name sortKey="O Donnell, Anne" sort="O Donnell, Anne" uniqKey="O Donnell A" first="Anne" last="O'Donnell">Anne O'Donnell</name><affiliation><nlm:affiliation>Division of Pulmonary, Critical Care and Sleep Medicine, Georgetown University Medical Center, Washington, DC, USA.</nlm:affiliation></affiliation></author><author><name sortKey="Morgan, Lucy" sort="Morgan, Lucy" uniqKey="Morgan L" first="Lucy" last="Morgan">Lucy Morgan</name><affiliation><nlm:affiliation>Dept of Respiratory Medicine, Concord Hospital, Concord Clinical School, University of Sydney, Sydney, Australia.</nlm:affiliation></affiliation></author><author><name sortKey="Milenkovic, Branislava" sort="Milenkovic, Branislava" uniqKey="Milenkovic B" first="Branislava" last="Milenkovic">Branislava Milenkovic</name><affiliation><nlm:affiliation>Faculty of Medicine, University of Belgrade, Belgrade, Serbia; Clinic for Pulmonary Diseases, Clinical Center of Serbia, Belgrade, Serbia.</nlm:affiliation></affiliation></author><author><name sortKey="Tramma, Leandro" sort="Tramma, Leandro" uniqKey="Tramma L" first="Leandro" last="Tramma">Leandro Tramma</name><affiliation><nlm:affiliation>College of Medicine, University of Dundee, Ninewells Hospital and Medical School, Dundee, UK.</nlm:affiliation></affiliation></author><author><name sortKey="Neves, Joao" sort="Neves, Joao" uniqKey="Neves J" first="Joao" last="Neves">Joao Neves</name><affiliation><nlm:affiliation>Medicina Interna, Centro Hospitalar do Porto, Porto, Portugal.</nlm:affiliation></affiliation></author><author><name sortKey="Menendez, Rosario" sort="Menendez, Rosario" uniqKey="Menendez R" first="Rosario" last="Menendez">Rosario Menendez</name><affiliation><nlm:affiliation>Pneumology Service, Universitary and Polytechnic Hospital La Fe, Valencia, Spain.</nlm:affiliation></affiliation></author><author><name sortKey="Paggiaro, Perluigi" sort="Paggiaro, Perluigi" uniqKey="Paggiaro P" first="Perluigi" last="Paggiaro">Perluigi Paggiaro</name><affiliation><nlm:affiliation>Dept of Surgery, Medicine, Molecular Biology and Critical Care, University of Pisa, Pisa, Italy.</nlm:affiliation></affiliation></author><author><name sortKey="Botnaru, Victor" sort="Botnaru, Victor" uniqKey="Botnaru V" first="Victor" last="Botnaru">Victor Botnaru</name><affiliation><nlm:affiliation>Division of Pneumology, Dept of Internal Medicine, State Medical University of Medicine and Pharmacy "Nicolae Testemitanu", Chisinau, Republic of Moldova.</nlm:affiliation></affiliation></author><author><name sortKey="Skrgat, Sabina" sort="Skrgat, Sabina" uniqKey="Skrgat S" first="Sabina" last="Skrgat">Sabina Skrgat</name><affiliation><nlm:affiliation>University Clinic of Respiratory and Allergic Diseases Golnik, Golnik, Slovenia.</nlm:affiliation></affiliation></author><author><name sortKey="Wilson, Robert" sort="Wilson, Robert" uniqKey="Wilson R" first="Robert" last="Wilson">Robert Wilson</name><affiliation><nlm:affiliation>Host Defence Unit, Royal Brompton Hospital, London, UK.</nlm:affiliation></affiliation></author><author><name sortKey="Goeminne, Pieter" sort="Goeminne, Pieter" uniqKey="Goeminne P" first="Pieter" last="Goeminne">Pieter Goeminne</name><affiliation><nlm:affiliation>Dept of Respiratory Medicine, AZ Nikolaas, Sint-Niklaas, Belgium.</nlm:affiliation></affiliation></author><author><name sortKey="De Soyza, Anthony" sort="De Soyza, Anthony" uniqKey="De Soyza A" first="Anthony" last="De Soyza">Anthony De Soyza</name><affiliation><nlm:affiliation>Institute of Cellular Medicine, Newcastle University, Newcastle upon Tyne, UK; Bronchiectasis Service, Freeman Hospital, Newcastle upon Tyne, UK.</nlm:affiliation></affiliation></author><author><name sortKey="Welte, Tobias" sort="Welte, Tobias" uniqKey="Welte T" first="Tobias" last="Welte">Tobias Welte</name><affiliation><nlm:affiliation>Dept of Respiratory Medicine, Hannover Medical School, Member of the German Centre for Lung Research, Hannover, Germany.</nlm:affiliation></affiliation></author><author><name sortKey="Torres, Antoni" sort="Torres, Antoni" uniqKey="Torres A" first="Antoni" last="Torres">Antoni Torres</name><affiliation><nlm:affiliation>Fundaciò Clìnic, IDIBAPS, CIBERES, Hospital Clinic de Barcelona, Barcelona, Spain.</nlm:affiliation></affiliation></author><author><name sortKey="Elborn, J Stuart" sort="Elborn, J Stuart" uniqKey="Elborn J" first="J Stuart" last="Elborn">J Stuart Elborn</name><affiliation><nlm:affiliation>School of Medicine, Dentistry and Biomedical Sciences, Queen's University of Belfast, Belfast, UK.</nlm:affiliation></affiliation></author><author><name sortKey="Blasi, Francesco" sort="Blasi, Francesco" uniqKey="Blasi F" first="Francesco" last="Blasi">Francesco Blasi</name><affiliation><nlm:affiliation>Respiratory Unit, IRCCS Fondazione Cà Granda Milano, Dept of Pathophysiology and Transplantation, University of Milan, Milan, Italy.</nlm:affiliation></affiliation></author></titleStmt><publicationStmt><idno type="wicri:source">PubMed</idno><date when="2016">2016</date><idno type="RBID">pubmed:27730179</idno><idno type="pmid">27730179</idno><idno type="doi">10.1183/23120541.00081-2015</idno><idno type="wicri:Area/PubMed/Corpus">002332</idno><idno type="wicri:explorRef" wicri:stream="PubMed" wicri:step="Corpus" wicri:corpus="PubMed">002332</idno></publicationStmt><sourceDesc><biblStruct><analytic><title xml:lang="en">The EMBARC European Bronchiectasis Registry: protocol for an international observational study.</title><author><name sortKey="Chalmers, James D" sort="Chalmers, James D" uniqKey="Chalmers J" first="James D" last="Chalmers">James D. Chalmers</name><affiliation><nlm:affiliation>College of Medicine, University of Dundee, Ninewells Hospital and Medical School, Dundee, UK; These authors contributed equally.</nlm:affiliation></affiliation></author><author><name sortKey="Aliberti, Stefano" sort="Aliberti, Stefano" uniqKey="Aliberti S" first="Stefano" last="Aliberti">Stefano Aliberti</name><affiliation><nlm:affiliation>Dept of Health Science, University of Milan Bicocca, Clinica Pneumologica, AO San Gerardo, Monza, Italy; These authors contributed equally.</nlm:affiliation></affiliation></author><author><name sortKey="Polverino, Eva" sort="Polverino, Eva" uniqKey="Polverino E" first="Eva" last="Polverino">Eva Polverino</name><affiliation><nlm:affiliation>Fundaciò Clìnic, IDIBAPS, CIBERES, Hospital Clinic de Barcelona, Barcelona, Spain; These authors contributed equally.</nlm:affiliation></affiliation></author><author><name sortKey="Vendrell, Montserrat" sort="Vendrell, Montserrat" uniqKey="Vendrell M" first="Montserrat" last="Vendrell">Montserrat Vendrell</name><affiliation><nlm:affiliation>Bronchiectasis Group, Girona Biomedical Research Institute (IDIBGI), Dr Trueta University Hospital, Girona, Spain.</nlm:affiliation></affiliation></author><author><name sortKey="Crichton, Megan" sort="Crichton, Megan" uniqKey="Crichton M" first="Megan" last="Crichton">Megan Crichton</name><affiliation><nlm:affiliation>College of Medicine, University of Dundee, Ninewells Hospital and Medical School, Dundee, UK.</nlm:affiliation></affiliation></author><author><name sortKey="Loebinger, Michael" sort="Loebinger, Michael" uniqKey="Loebinger M" first="Michael" last="Loebinger">Michael Loebinger</name><affiliation><nlm:affiliation>Host Defence Unit, Royal Brompton Hospital, London, UK.</nlm:affiliation></affiliation></author><author><name sortKey="Dimakou, Katerina" sort="Dimakou, Katerina" uniqKey="Dimakou K" first="Katerina" last="Dimakou">Katerina Dimakou</name><affiliation><nlm:affiliation>5th Pulmonary Department, "Sotiria" Chest Hospital, Athens, Greece.</nlm:affiliation></affiliation></author><author><name sortKey="Clifton, Ian" sort="Clifton, Ian" uniqKey="Clifton I" first="Ian" last="Clifton">Ian Clifton</name><affiliation><nlm:affiliation>Leeds Centre for Respiratory Medicine, St James's Hospital, Leeds, UK.</nlm:affiliation></affiliation></author><author><name sortKey="Van Der Eerden, Menno" sort="Van Der Eerden, Menno" uniqKey="Van Der Eerden M" first="Menno" last="Van Der Eerden">Menno Van Der Eerden</name><affiliation><nlm:affiliation>Dept of Pulmonary Medicine, Erasmus MC Rotterdam, Rotterdam, The Netherlands.</nlm:affiliation></affiliation></author><author><name sortKey="Rohde, Gernot" sort="Rohde, Gernot" uniqKey="Rohde G" first="Gernot" last="Rohde">Gernot Rohde</name><affiliation><nlm:affiliation>Dept of Respiratory Medicine, Maastricht University Medical Center, Maastricht, The Netherlands.</nlm:affiliation></affiliation></author><author><name sortKey="Murris Espin, Marlene" sort="Murris Espin, Marlene" uniqKey="Murris Espin M" first="Marlene" last="Murris-Espin">Marlene Murris-Espin</name><affiliation><nlm:affiliation>Pôle des Voies Respiratoires, Hôpital de Larrey, CHU de Toulouse, Toulouse, France.</nlm:affiliation></affiliation></author><author><name sortKey="Masefield, Sarah" sort="Masefield, Sarah" uniqKey="Masefield S" first="Sarah" last="Masefield">Sarah Masefield</name><affiliation><nlm:affiliation>European Lung Foundation, Sheffield, UK.</nlm:affiliation></affiliation></author><author><name sortKey="Gerada, Eleanor" sort="Gerada, Eleanor" uniqKey="Gerada E" first="Eleanor" last="Gerada">Eleanor Gerada</name><affiliation><nlm:affiliation>Dept of Respiratory Medicine, Mater Dei Hospital, Msida, Malta.</nlm:affiliation></affiliation></author><author><name sortKey="Shteinberg, Michal" sort="Shteinberg, Michal" uniqKey="Shteinberg M" first="Michal" last="Shteinberg">Michal Shteinberg</name><affiliation><nlm:affiliation>Pulmonary Institute, Carmel Medical Center, Haifa, Israel.</nlm:affiliation></affiliation></author><author><name sortKey="Ringshausen, Felix" sort="Ringshausen, Felix" uniqKey="Ringshausen F" first="Felix" last="Ringshausen">Felix Ringshausen</name><affiliation><nlm:affiliation>Dept of Respiratory Medicine, Hannover Medical School, Member of the German Centre for Lung Research, Hannover, Germany.</nlm:affiliation></affiliation></author><author><name sortKey="Haworth, Charles" sort="Haworth, Charles" uniqKey="Haworth C" first="Charles" last="Haworth">Charles Haworth</name><affiliation><nlm:affiliation>Cambridge Centre for Lung Infection, Papworth Hospital, Cambridge, UK.</nlm:affiliation></affiliation></author><author><name sortKey="Boersma, Wim" sort="Boersma, Wim" uniqKey="Boersma W" first="Wim" last="Boersma">Wim Boersma</name><affiliation><nlm:affiliation>Dept of Pulmonary Diseases, Medical Centre Alkmaar, Alkmaar, The Netherlands.</nlm:affiliation></affiliation></author><author><name sortKey="Rademacher, Jessica" sort="Rademacher, Jessica" uniqKey="Rademacher J" first="Jessica" last="Rademacher">Jessica Rademacher</name><affiliation><nlm:affiliation>Dept of Respiratory Medicine, Hannover Medical School, Member of the German Centre for Lung Research, Hannover, Germany.</nlm:affiliation></affiliation></author><author><name sortKey="Hill, Adam T" sort="Hill, Adam T" uniqKey="Hill A" first="Adam T" last="Hill">Adam T. Hill</name><affiliation><nlm:affiliation>Royal Infirmary of Edinburgh, University of Edinburgh, Edinburgh, UK.</nlm:affiliation></affiliation></author><author><name sortKey="Aksamit, Timothy" sort="Aksamit, Timothy" uniqKey="Aksamit T" first="Timothy" last="Aksamit">Timothy Aksamit</name><affiliation><nlm:affiliation>Mayo Clinic College of Medicine, Rochester, MN, USA.</nlm:affiliation></affiliation></author><author><name sortKey="O Donnell, Anne" sort="O Donnell, Anne" uniqKey="O Donnell A" first="Anne" last="O'Donnell">Anne O'Donnell</name><affiliation><nlm:affiliation>Division of Pulmonary, Critical Care and Sleep Medicine, Georgetown University Medical Center, Washington, DC, USA.</nlm:affiliation></affiliation></author><author><name sortKey="Morgan, Lucy" sort="Morgan, Lucy" uniqKey="Morgan L" first="Lucy" last="Morgan">Lucy Morgan</name><affiliation><nlm:affiliation>Dept of Respiratory Medicine, Concord Hospital, Concord Clinical School, University of Sydney, Sydney, Australia.</nlm:affiliation></affiliation></author><author><name sortKey="Milenkovic, Branislava" sort="Milenkovic, Branislava" uniqKey="Milenkovic B" first="Branislava" last="Milenkovic">Branislava Milenkovic</name><affiliation><nlm:affiliation>Faculty of Medicine, University of Belgrade, Belgrade, Serbia; Clinic for Pulmonary Diseases, Clinical Center of Serbia, Belgrade, Serbia.</nlm:affiliation></affiliation></author><author><name sortKey="Tramma, Leandro" sort="Tramma, Leandro" uniqKey="Tramma L" first="Leandro" last="Tramma">Leandro Tramma</name><affiliation><nlm:affiliation>College of Medicine, University of Dundee, Ninewells Hospital and Medical School, Dundee, UK.</nlm:affiliation></affiliation></author><author><name sortKey="Neves, Joao" sort="Neves, Joao" uniqKey="Neves J" first="Joao" last="Neves">Joao Neves</name><affiliation><nlm:affiliation>Medicina Interna, Centro Hospitalar do Porto, Porto, Portugal.</nlm:affiliation></affiliation></author><author><name sortKey="Menendez, Rosario" sort="Menendez, Rosario" uniqKey="Menendez R" first="Rosario" last="Menendez">Rosario Menendez</name><affiliation><nlm:affiliation>Pneumology Service, Universitary and Polytechnic Hospital La Fe, Valencia, Spain.</nlm:affiliation></affiliation></author><author><name sortKey="Paggiaro, Perluigi" sort="Paggiaro, Perluigi" uniqKey="Paggiaro P" first="Perluigi" last="Paggiaro">Perluigi Paggiaro</name><affiliation><nlm:affiliation>Dept of Surgery, Medicine, Molecular Biology and Critical Care, University of Pisa, Pisa, Italy.</nlm:affiliation></affiliation></author><author><name sortKey="Botnaru, Victor" sort="Botnaru, Victor" uniqKey="Botnaru V" first="Victor" last="Botnaru">Victor Botnaru</name><affiliation><nlm:affiliation>Division of Pneumology, Dept of Internal Medicine, State Medical University of Medicine and Pharmacy "Nicolae Testemitanu", Chisinau, Republic of Moldova.</nlm:affiliation></affiliation></author><author><name sortKey="Skrgat, Sabina" sort="Skrgat, Sabina" uniqKey="Skrgat S" first="Sabina" last="Skrgat">Sabina Skrgat</name><affiliation><nlm:affiliation>University Clinic of Respiratory and Allergic Diseases Golnik, Golnik, Slovenia.</nlm:affiliation></affiliation></author><author><name sortKey="Wilson, Robert" sort="Wilson, Robert" uniqKey="Wilson R" first="Robert" last="Wilson">Robert Wilson</name><affiliation><nlm:affiliation>Host Defence Unit, Royal Brompton Hospital, London, UK.</nlm:affiliation></affiliation></author><author><name sortKey="Goeminne, Pieter" sort="Goeminne, Pieter" uniqKey="Goeminne P" first="Pieter" last="Goeminne">Pieter Goeminne</name><affiliation><nlm:affiliation>Dept of Respiratory Medicine, AZ Nikolaas, Sint-Niklaas, Belgium.</nlm:affiliation></affiliation></author><author><name sortKey="De Soyza, Anthony" sort="De Soyza, Anthony" uniqKey="De Soyza A" first="Anthony" last="De Soyza">Anthony De Soyza</name><affiliation><nlm:affiliation>Institute of Cellular Medicine, Newcastle University, Newcastle upon Tyne, UK; Bronchiectasis Service, Freeman Hospital, Newcastle upon Tyne, UK.</nlm:affiliation></affiliation></author><author><name sortKey="Welte, Tobias" sort="Welte, Tobias" uniqKey="Welte T" first="Tobias" last="Welte">Tobias Welte</name><affiliation><nlm:affiliation>Dept of Respiratory Medicine, Hannover Medical School, Member of the German Centre for Lung Research, Hannover, Germany.</nlm:affiliation></affiliation></author><author><name sortKey="Torres, Antoni" sort="Torres, Antoni" uniqKey="Torres A" first="Antoni" last="Torres">Antoni Torres</name><affiliation><nlm:affiliation>Fundaciò Clìnic, IDIBAPS, CIBERES, Hospital Clinic de Barcelona, Barcelona, Spain.</nlm:affiliation></affiliation></author><author><name sortKey="Elborn, J Stuart" sort="Elborn, J Stuart" uniqKey="Elborn J" first="J Stuart" last="Elborn">J Stuart Elborn</name><affiliation><nlm:affiliation>School of Medicine, Dentistry and Biomedical Sciences, Queen's University of Belfast, Belfast, UK.</nlm:affiliation></affiliation></author><author><name sortKey="Blasi, Francesco" sort="Blasi, Francesco" uniqKey="Blasi F" first="Francesco" last="Blasi">Francesco Blasi</name><affiliation><nlm:affiliation>Respiratory Unit, IRCCS Fondazione Cà Granda Milano, Dept of Pathophysiology and Transplantation, University of Milan, Milan, Italy.</nlm:affiliation></affiliation></author></analytic><series><title level="j">ERJ open research</title><idno type="ISSN">2312-0541</idno><imprint><date when="2016" type="published">2016</date></imprint></series></biblStruct></sourceDesc></fileDesc><profileDesc><textClass></textClass></profileDesc></teiHeader><front><div type="abstract" xml:lang="en">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.</div></front></TEI><pubmed><MedlineCitation Status="PubMed-not-MEDLINE" Owner="NLM"><PMID Version="1">27730179</PMID><DateCreated><Year>2016</Year><Month>10</Month><Day>12</Day></DateCreated><DateRevised><Year>2017</Year><Month>08</Month><Day>16</Day></DateRevised><Article PubModel="Electronic-eCollection"><Journal><ISSN IssnType="Print">2312-0541</ISSN><JournalIssue CitedMedium="Print"><Volume>2</Volume><Issue>1</Issue><PubDate><Year>2016</Year><Month>Jan</Month></PubDate></JournalIssue><Title>ERJ open research</Title><ISOAbbreviation>ERJ Open Res</ISOAbbreviation></Journal><ArticleTitle>The EMBARC European Bronchiectasis Registry: protocol for an international observational study.</ArticleTitle><ELocationID EIdType="pii" ValidYN="Y">00081-2015</ELocationID><Abstract><AbstractText>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.</AbstractText></Abstract><AuthorList CompleteYN="Y"><Author ValidYN="Y"><LastName>Chalmers</LastName><ForeName>James D</ForeName><Initials>JD</Initials><AffiliationInfo><Affiliation>College of Medicine, University of Dundee, Ninewells Hospital and Medical School, Dundee, UK; These authors contributed equally.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Aliberti</LastName><ForeName>Stefano</ForeName><Initials>S</Initials><AffiliationInfo><Affiliation>Dept of Health Science, University of Milan Bicocca, Clinica Pneumologica, AO San Gerardo, Monza, Italy; These authors contributed equally.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Polverino</LastName><ForeName>Eva</ForeName><Initials>E</Initials><AffiliationInfo><Affiliation>Fundaciò Clìnic, IDIBAPS, CIBERES, Hospital Clinic de Barcelona, Barcelona, Spain; These authors contributed equally.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Vendrell</LastName><ForeName>Montserrat</ForeName><Initials>M</Initials><AffiliationInfo><Affiliation>Bronchiectasis Group, Girona Biomedical Research Institute (IDIBGI), Dr Trueta University Hospital, Girona, Spain.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Crichton</LastName><ForeName>Megan</ForeName><Initials>M</Initials><AffiliationInfo><Affiliation>College of Medicine, University of Dundee, Ninewells Hospital and Medical School, Dundee, UK.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Loebinger</LastName><ForeName>Michael</ForeName><Initials>M</Initials><AffiliationInfo><Affiliation>Host Defence Unit, Royal Brompton Hospital, London, UK.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Dimakou</LastName><ForeName>Katerina</ForeName><Initials>K</Initials><AffiliationInfo><Affiliation>5th Pulmonary Department, "Sotiria" Chest Hospital, Athens, Greece.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Clifton</LastName><ForeName>Ian</ForeName><Initials>I</Initials><AffiliationInfo><Affiliation>Leeds Centre for Respiratory Medicine, St James's Hospital, Leeds, UK.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>van der Eerden</LastName><ForeName>Menno</ForeName><Initials>M</Initials><AffiliationInfo><Affiliation>Dept of Pulmonary Medicine, Erasmus MC Rotterdam, Rotterdam, The Netherlands.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Rohde</LastName><ForeName>Gernot</ForeName><Initials>G</Initials><AffiliationInfo><Affiliation>Dept of Respiratory Medicine, Maastricht University Medical Center, Maastricht, The Netherlands.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Murris-Espin</LastName><ForeName>Marlene</ForeName><Initials>M</Initials><AffiliationInfo><Affiliation>Pôle des Voies Respiratoires, Hôpital de Larrey, CHU de Toulouse, Toulouse, France.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Masefield</LastName><ForeName>Sarah</ForeName><Initials>S</Initials><AffiliationInfo><Affiliation>European Lung Foundation, Sheffield, UK.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Gerada</LastName><ForeName>Eleanor</ForeName><Initials>E</Initials><AffiliationInfo><Affiliation>Dept of Respiratory Medicine, Mater Dei Hospital, Msida, Malta.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Shteinberg</LastName><ForeName>Michal</ForeName><Initials>M</Initials><AffiliationInfo><Affiliation>Pulmonary Institute, Carmel Medical Center, Haifa, Israel.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Ringshausen</LastName><ForeName>Felix</ForeName><Initials>F</Initials><AffiliationInfo><Affiliation>Dept of Respiratory Medicine, Hannover Medical School, Member of the German Centre for Lung Research, Hannover, Germany.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Haworth</LastName><ForeName>Charles</ForeName><Initials>C</Initials><AffiliationInfo><Affiliation>Cambridge Centre for Lung Infection, Papworth Hospital, Cambridge, UK.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Boersma</LastName><ForeName>Wim</ForeName><Initials>W</Initials><AffiliationInfo><Affiliation>Dept of Pulmonary Diseases, Medical Centre Alkmaar, Alkmaar, The Netherlands.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Rademacher</LastName><ForeName>Jessica</ForeName><Initials>J</Initials><AffiliationInfo><Affiliation>Dept of Respiratory Medicine, Hannover Medical School, Member of the German Centre for Lung Research, Hannover, Germany.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Hill</LastName><ForeName>Adam T</ForeName><Initials>AT</Initials><AffiliationInfo><Affiliation>Royal Infirmary of Edinburgh, University of Edinburgh, Edinburgh, UK.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Aksamit</LastName><ForeName>Timothy</ForeName><Initials>T</Initials><AffiliationInfo><Affiliation>Mayo Clinic College of Medicine, Rochester, MN, USA.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>O'Donnell</LastName><ForeName>Anne</ForeName><Initials>A</Initials><AffiliationInfo><Affiliation>Division of Pulmonary, Critical Care and Sleep Medicine, Georgetown University Medical Center, Washington, DC, USA.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Morgan</LastName><ForeName>Lucy</ForeName><Initials>L</Initials><AffiliationInfo><Affiliation>Dept of Respiratory Medicine, Concord Hospital, Concord Clinical School, University of Sydney, Sydney, Australia.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Milenkovic</LastName><ForeName>Branislava</ForeName><Initials>B</Initials><AffiliationInfo><Affiliation>Faculty of Medicine, University of Belgrade, Belgrade, Serbia; Clinic for Pulmonary Diseases, Clinical Center of Serbia, Belgrade, Serbia.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Tramma</LastName><ForeName>Leandro</ForeName><Initials>L</Initials><AffiliationInfo><Affiliation>College of Medicine, University of Dundee, Ninewells Hospital and Medical School, Dundee, UK.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Neves</LastName><ForeName>Joao</ForeName><Initials>J</Initials><AffiliationInfo><Affiliation>Medicina Interna, Centro Hospitalar do Porto, Porto, Portugal.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Menendez</LastName><ForeName>Rosario</ForeName><Initials>R</Initials><AffiliationInfo><Affiliation>Pneumology Service, Universitary and Polytechnic Hospital La Fe, Valencia, Spain.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Paggiaro</LastName><ForeName>Perluigi</ForeName><Initials>P</Initials><AffiliationInfo><Affiliation>Dept of Surgery, Medicine, Molecular Biology and Critical Care, University of Pisa, Pisa, Italy.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Botnaru</LastName><ForeName>Victor</ForeName><Initials>V</Initials><AffiliationInfo><Affiliation>Division of Pneumology, Dept of Internal Medicine, State Medical University of Medicine and Pharmacy "Nicolae Testemitanu", Chisinau, Republic of Moldova.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Skrgat</LastName><ForeName>Sabina</ForeName><Initials>S</Initials><AffiliationInfo><Affiliation>University Clinic of Respiratory and Allergic Diseases Golnik, Golnik, Slovenia.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Wilson</LastName><ForeName>Robert</ForeName><Initials>R</Initials><AffiliationInfo><Affiliation>Host Defence Unit, Royal Brompton Hospital, London, UK.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Goeminne</LastName><ForeName>Pieter</ForeName><Initials>P</Initials><AffiliationInfo><Affiliation>Dept of Respiratory Medicine, AZ Nikolaas, Sint-Niklaas, Belgium.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>De Soyza</LastName><ForeName>Anthony</ForeName><Initials>A</Initials><AffiliationInfo><Affiliation>Institute of Cellular Medicine, Newcastle University, Newcastle upon Tyne, UK; Bronchiectasis Service, Freeman Hospital, Newcastle upon Tyne, UK.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Welte</LastName><ForeName>Tobias</ForeName><Initials>T</Initials><AffiliationInfo><Affiliation>Dept of Respiratory Medicine, Hannover Medical School, Member of the German Centre for Lung Research, Hannover, Germany.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Torres</LastName><ForeName>Antoni</ForeName><Initials>A</Initials><AffiliationInfo><Affiliation>Fundaciò Clìnic, IDIBAPS, CIBERES, Hospital Clinic de Barcelona, Barcelona, Spain.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Elborn</LastName><ForeName>J Stuart</ForeName><Initials>JS</Initials><AffiliationInfo><Affiliation>School of Medicine, Dentistry and Biomedical Sciences, Queen's University of Belfast, Belfast, UK.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Blasi</LastName><ForeName>Francesco</ForeName><Initials>F</Initials><AffiliationInfo><Affiliation>Respiratory Unit, IRCCS Fondazione Cà Granda Milano, Dept of Pathophysiology and Transplantation, University of Milan, Milan, 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Masefield is an employee of the European Respiratory Society. Disclosures can be found alongside this article at openres.ersjournals.com</CoiStatement></MedlineCitation><PubmedData><History><PubMedPubDate PubStatus="received"><Year>2015</Year><Month>10</Month><Day>29</Day></PubMedPubDate><PubMedPubDate PubStatus="accepted"><Year>2015</Year><Month>11</Month><Day>02</Day></PubMedPubDate><PubMedPubDate PubStatus="entrez"><Year>2016</Year><Month>10</Month><Day>13</Day><Hour>6</Hour><Minute>0</Minute></PubMedPubDate><PubMedPubDate PubStatus="pubmed"><Year>2016</Year><Month>10</Month><Day>13</Day><Hour>6</Hour><Minute>0</Minute></PubMedPubDate><PubMedPubDate PubStatus="medline"><Year>2016</Year><Month>10</Month><Day>13</Day><Hour>6</Hour><Minute>1</Minute></PubMedPubDate></History><PublicationStatus>epublish</PublicationStatus><ArticleIdList><ArticleId IdType="pubmed">27730179</ArticleId><ArticleId IdType="doi">10.1183/23120541.00081-2015</ArticleId><ArticleId IdType="pii">00081-2015</ArticleId><ArticleId IdType="pmc">PMC5005162</ArticleId></ArticleIdList></PubmedData></pubmed></record>Pour manipuler ce document sous Unix (Dilib)
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