The EMBARC European Bronchiectasis Registry: protocol for an international observational study
Identifieur interne : 000568 ( Pmc/Checkpoint ); précédent : 000567; suivant : 000569The EMBARC European Bronchiectasis Registry: protocol for an international observational study
Auteurs : James D. Chalmers [Royaume-Uni] ; Stefano Aliberti [Italie] ; Eva Polverino [Espagne] ; Montserrat Vendrell [Espagne] ; Megan Crichton [Royaume-Uni] ; Michael Loebinger [Royaume-Uni] ; Katerina Dimakou [Grèce] ; Ian Clifton [Royaume-Uni] ; Menno Van Der Eerden [Pays-Bas] ; Gernot Rohde [Pays-Bas] ; Marlene Murris-Espin [France] ; Sarah Masefield [Royaume-Uni] ; Eleanor Gerada [Malte] ; Michal Shteinberg [Israël] ; Felix Ringshausen [Allemagne] ; Charles Haworth [Royaume-Uni] ; Wim Boersma [Pays-Bas] ; Jessica Rademacher [Allemagne] ; Adam T. Hill [Royaume-Uni] ; Timothy Aksamit [États-Unis] ; Anne O'Donnell [États-Unis] ; Lucy Morgan [Australie] ; Branislava Milenkovic [Serbie] ; Leandro Tramma [Royaume-Uni] ; Joao Neves [Portugal] ; Rosario Menendez [Espagne] ; Perluigi Paggiaro [Italie] ; Victor Botnaru ; Sabina Skrgat [Slovénie] ; Robert Wilson [Royaume-Uni] ; Pieter Goeminne [Belgique] ; Anthony De Soyza [Royaume-Uni] ; Tobias Welte [Allemagne] ; Antoni Torres [Espagne] ; J. Stuart Elborn [Royaume-Uni] ; Francesco Blasi [Italie]Source :
- 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.
Url:
DOI: 10.1183/23120541.00081-2015
PubMed: 27730179
PubMed Central: 5005162
Affiliations:
- Allemagne, Australie, Belgique, Espagne, France, Grèce, Israël, Italie, Malte, Pays-Bas, Portugal, Royaume-Uni, Serbie, Slovénie, États-Unis
- Angleterre, Attique (région), Basse-Saxe, Catalogne, District de Columbia, Grand Londres, Hollande-Méridionale, Lombardie, Midi-Pyrénées, Minnesota, Nouvelle-Galles du Sud, Occitanie (région administrative), Toscane, Écosse
- Athènes, Barcelone, Hanovre, Londres, Milan, Pise, Rotterdam, Sydney, Toulouse, Édimbourg
- Université d'Édimbourg, Université de Pise, Université de Sydney
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<author><name sortKey="Neves, Joao" sort="Neves, Joao" uniqKey="Neves J" first="Joao" last="Neves">Joao Neves</name>
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<author><name sortKey="Menendez, Rosario" sort="Menendez, Rosario" uniqKey="Menendez R" first="Rosario" last="Menendez">Rosario Menendez</name>
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<author><name sortKey="Paggiaro, Perluigi" sort="Paggiaro, Perluigi" uniqKey="Paggiaro P" first="Perluigi" last="Paggiaro">Perluigi Paggiaro</name>
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<author><name sortKey="Botnaru, Victor" sort="Botnaru, Victor" uniqKey="Botnaru V" first="Victor" last="Botnaru">Victor Botnaru</name>
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<author><name sortKey="Skrgat, Sabina" sort="Skrgat, Sabina" uniqKey="Skrgat S" first="Sabina" last="Skrgat">Sabina Skrgat</name>
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<author><name sortKey="Wilson, Robert" sort="Wilson, Robert" uniqKey="Wilson R" first="Robert" last="Wilson">Robert Wilson</name>
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<author><name sortKey="Goeminne, Pieter" sort="Goeminne, Pieter" uniqKey="Goeminne P" first="Pieter" last="Goeminne">Pieter Goeminne</name>
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<author><name sortKey="De Soyza, Anthony" sort="De Soyza, Anthony" uniqKey="De Soyza A" first="Anthony" last="De Soyza">Anthony De Soyza</name>
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<affiliation wicri:level="1"><nlm:aff id="af30">Bronchiectasis Service, Freeman Hospital, Newcastle upon Tyne, UK</nlm:aff>
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<author><name sortKey="Welte, Tobias" sort="Welte, Tobias" uniqKey="Welte T" first="Tobias" last="Welte">Tobias Welte</name>
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<author><name sortKey="Elborn, J Stuart" sort="Elborn, J Stuart" uniqKey="Elborn J" first="J. Stuart" last="Elborn">J. Stuart Elborn</name>
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</author>
<author><name sortKey="Blasi, Francesco" sort="Blasi, Francesco" uniqKey="Blasi F" first="Francesco" last="Blasi">Francesco Blasi</name>
<affiliation wicri:level="3"><nlm:aff id="af32">Respiratory Unit, IRCCS Fondazione Cà Granda Milano, Dept of Pathophysiology and Transplantation, University of Milan, Milan, Italy</nlm:aff>
<country xml:lang="fr">Italie</country>
<wicri:regionArea>Respiratory Unit, IRCCS Fondazione Cà Granda Milano, Dept of Pathophysiology and Transplantation, University of Milan, Milan</wicri:regionArea>
<placeName><settlement type="city">Milan</settlement>
<region nuts="2">Lombardie</region>
</placeName>
</affiliation>
</author>
</titleStmt>
<publicationStmt><idno type="wicri:source">PMC</idno>
<idno type="pmid">27730179</idno>
<idno type="pmc">5005162</idno>
<idno type="url">http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5005162</idno>
<idno type="RBID">PMC:5005162</idno>
<idno type="doi">10.1183/23120541.00081-2015</idno>
<date when="2016">2016</date>
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<idno type="wicri:Area/Pmc/Checkpoint">000568</idno>
<idno type="wicri:explorRef" wicri:stream="Pmc" wicri:step="Checkpoint">000568</idno>
</publicationStmt>
<sourceDesc><biblStruct><analytic><title xml:lang="en" level="a" type="main">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 wicri:level="1"><nlm:aff id="af1">College of Medicine, University of Dundee, Ninewells Hospital and Medical School, Dundee, UK</nlm:aff>
<country xml:lang="fr">Royaume-Uni</country>
<wicri:regionArea>College of Medicine, University of Dundee, Ninewells Hospital and Medical School, Dundee</wicri:regionArea>
<wicri:noRegion>Dundee</wicri:noRegion>
</affiliation>
<affiliation><nlm:aff id="af33">These authors contributed equally</nlm:aff>
</affiliation>
</author>
<author><name sortKey="Aliberti, Stefano" sort="Aliberti, Stefano" uniqKey="Aliberti S" first="Stefano" last="Aliberti">Stefano Aliberti</name>
<affiliation wicri:level="1"><nlm:aff id="af2">Dept of Health Science, University of Milan Bicocca, Clinica Pneumologica, AO San Gerardo, Monza, Italy</nlm:aff>
<country xml:lang="fr">Italie</country>
<wicri:regionArea>Dept of Health Science, University of Milan Bicocca, Clinica Pneumologica, AO San Gerardo, Monza</wicri:regionArea>
<wicri:noRegion>Monza</wicri:noRegion>
</affiliation>
<affiliation><nlm:aff id="af33">These authors contributed equally</nlm:aff>
</affiliation>
</author>
<author><name sortKey="Polverino, Eva" sort="Polverino, Eva" uniqKey="Polverino E" first="Eva" last="Polverino">Eva Polverino</name>
<affiliation wicri:level="3"><nlm:aff id="af3">Fundaciò Clìnic, IDIBAPS, CIBERES, Hospital Clinic de Barcelona, Barcelona, Spain</nlm:aff>
<country xml:lang="fr">Espagne</country>
<wicri:regionArea>Fundaciò Clìnic, IDIBAPS, CIBERES, Hospital Clinic de Barcelona, Barcelona</wicri:regionArea>
<placeName><settlement type="city">Barcelone</settlement>
<region nuts="2" type="region">Catalogne</region>
</placeName>
</affiliation>
<affiliation><nlm:aff id="af33">These authors contributed equally</nlm:aff>
</affiliation>
</author>
<author><name sortKey="Vendrell, Montserrat" sort="Vendrell, Montserrat" uniqKey="Vendrell M" first="Montserrat" last="Vendrell">Montserrat Vendrell</name>
<affiliation wicri:level="1"><nlm:aff id="af4">Bronchiectasis Group, Girona Biomedical Research Institute (IDIBGI), Dr Trueta University Hospital, Girona, Spain</nlm:aff>
<country xml:lang="fr">Espagne</country>
<wicri:regionArea>Bronchiectasis Group, Girona Biomedical Research Institute (IDIBGI), Dr Trueta University Hospital, Girona</wicri:regionArea>
<wicri:noRegion>Girona</wicri:noRegion>
</affiliation>
</author>
<author><name sortKey="Crichton, Megan" sort="Crichton, Megan" uniqKey="Crichton M" first="Megan" last="Crichton">Megan Crichton</name>
<affiliation wicri:level="1"><nlm:aff id="af1">College of Medicine, University of Dundee, Ninewells Hospital and Medical School, Dundee, UK</nlm:aff>
<country xml:lang="fr">Royaume-Uni</country>
<wicri:regionArea>College of Medicine, University of Dundee, Ninewells Hospital and Medical School, Dundee</wicri:regionArea>
<wicri:noRegion>Dundee</wicri:noRegion>
</affiliation>
</author>
<author><name sortKey="Loebinger, Michael" sort="Loebinger, Michael" uniqKey="Loebinger M" first="Michael" last="Loebinger">Michael Loebinger</name>
<affiliation wicri:level="3"><nlm:aff id="af5">Host Defence Unit, Royal Brompton Hospital, London, UK</nlm:aff>
<country xml:lang="fr">Royaume-Uni</country>
<wicri:regionArea>Host Defence Unit, Royal Brompton Hospital, London</wicri:regionArea>
<placeName><settlement type="city">Londres</settlement>
<region type="country">Angleterre</region>
<region type="région" nuts="1">Grand Londres</region>
</placeName>
</affiliation>
</author>
<author><name sortKey="Dimakou, Katerina" sort="Dimakou, Katerina" uniqKey="Dimakou K" first="Katerina" last="Dimakou">Katerina Dimakou</name>
<affiliation wicri:level="3"><nlm:aff id="af6">5th Pulmonary Department, “Sotiria” Chest Hospital, Athens, Greece</nlm:aff>
<country xml:lang="fr">Grèce</country>
<wicri:regionArea>5th Pulmonary Department, “Sotiria” Chest Hospital, Athens</wicri:regionArea>
<placeName><settlement type="city">Athènes</settlement>
<region nuts="2" type="region">Attique (région)</region>
</placeName>
</affiliation>
</author>
<author><name sortKey="Clifton, Ian" sort="Clifton, Ian" uniqKey="Clifton I" first="Ian" last="Clifton">Ian Clifton</name>
<affiliation wicri:level="1"><nlm:aff id="af7">Leeds Centre for Respiratory Medicine, St James's Hospital, Leeds, UK</nlm:aff>
<country xml:lang="fr">Royaume-Uni</country>
<wicri:regionArea>Leeds Centre for Respiratory Medicine, St James's Hospital, Leeds</wicri:regionArea>
<wicri:noRegion>Leeds</wicri:noRegion>
</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 wicri:level="3"><nlm:aff id="af8">Dept of Pulmonary Medicine, Erasmus MC Rotterdam, Rotterdam, The Netherlands</nlm:aff>
<country xml:lang="fr">Pays-Bas</country>
<wicri:regionArea>Dept of Pulmonary Medicine, Erasmus MC Rotterdam, Rotterdam</wicri:regionArea>
<placeName><settlement type="city">Rotterdam</settlement>
<region nuts="2" type="province">Hollande-Méridionale</region>
</placeName>
</affiliation>
</author>
<author><name sortKey="Rohde, Gernot" sort="Rohde, Gernot" uniqKey="Rohde G" first="Gernot" last="Rohde">Gernot Rohde</name>
<affiliation wicri:level="1"><nlm:aff id="af9">Dept of Respiratory Medicine, Maastricht University Medical Center, Maastricht, The Netherlands</nlm:aff>
<country xml:lang="fr">Pays-Bas</country>
<wicri:regionArea>Dept of Respiratory Medicine, Maastricht University Medical Center, Maastricht</wicri:regionArea>
<wicri:noRegion>Maastricht</wicri:noRegion>
</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 wicri:level="3"><nlm:aff id="af10">Pôle des Voies Respiratoires, Hôpital de Larrey, CHU de Toulouse, Toulouse, France</nlm:aff>
<country xml:lang="fr">France</country>
<wicri:regionArea>Pôle des Voies Respiratoires, Hôpital de Larrey, CHU de Toulouse, Toulouse</wicri:regionArea>
<placeName><region type="region">Occitanie (région administrative)</region>
<region type="old region">Midi-Pyrénées</region>
<settlement type="city">Toulouse</settlement>
</placeName>
</affiliation>
</author>
<author><name sortKey="Masefield, Sarah" sort="Masefield, Sarah" uniqKey="Masefield S" first="Sarah" last="Masefield">Sarah Masefield</name>
<affiliation wicri:level="1"><nlm:aff id="af11">European Lung Foundation, Sheffield, UK</nlm:aff>
<country xml:lang="fr">Royaume-Uni</country>
<wicri:regionArea>European Lung Foundation, Sheffield</wicri:regionArea>
<wicri:noRegion>Sheffield</wicri:noRegion>
</affiliation>
</author>
<author><name sortKey="Gerada, Eleanor" sort="Gerada, Eleanor" uniqKey="Gerada E" first="Eleanor" last="Gerada">Eleanor Gerada</name>
<affiliation wicri:level="1"><nlm:aff id="af12">Dept of Respiratory Medicine, Mater Dei Hospital, Msida, Malta</nlm:aff>
<country xml:lang="fr">Malte</country>
<wicri:regionArea>Dept of Respiratory Medicine, Mater Dei Hospital, Msida</wicri:regionArea>
<wicri:noRegion>Msida</wicri:noRegion>
</affiliation>
</author>
<author><name sortKey="Shteinberg, Michal" sort="Shteinberg, Michal" uniqKey="Shteinberg M" first="Michal" last="Shteinberg">Michal Shteinberg</name>
<affiliation wicri:level="1"><nlm:aff id="af13">Pulmonary Institute, Carmel Medical Center, Haifa, Israel</nlm:aff>
<country xml:lang="fr">Israël</country>
<wicri:regionArea>Pulmonary Institute, Carmel Medical Center, Haifa</wicri:regionArea>
<wicri:noRegion>Haifa</wicri:noRegion>
</affiliation>
</author>
<author><name sortKey="Ringshausen, Felix" sort="Ringshausen, Felix" uniqKey="Ringshausen F" first="Felix" last="Ringshausen">Felix Ringshausen</name>
<affiliation wicri:level="3"><nlm:aff id="af14">Dept of Respiratory Medicine, Hannover Medical School, Member of the German Centre for Lung Research, Hannover, Germany</nlm:aff>
<country xml:lang="fr">Allemagne</country>
<wicri:regionArea>Dept of Respiratory Medicine, Hannover Medical School, Member of the German Centre for Lung Research, Hannover</wicri:regionArea>
<placeName><region type="land" nuts="2">Basse-Saxe</region>
<settlement type="city">Hanovre</settlement>
</placeName>
</affiliation>
</author>
<author><name sortKey="Haworth, Charles" sort="Haworth, Charles" uniqKey="Haworth C" first="Charles" last="Haworth">Charles Haworth</name>
<affiliation wicri:level="1"><nlm:aff id="af15">Cambridge Centre for Lung Infection, Papworth Hospital, Cambridge, UK</nlm:aff>
<country xml:lang="fr">Royaume-Uni</country>
<wicri:regionArea>Cambridge Centre for Lung Infection, Papworth Hospital, Cambridge</wicri:regionArea>
<wicri:noRegion>Cambridge</wicri:noRegion>
</affiliation>
</author>
<author><name sortKey="Boersma, Wim" sort="Boersma, Wim" uniqKey="Boersma W" first="Wim" last="Boersma">Wim Boersma</name>
<affiliation wicri:level="1"><nlm:aff id="af16">Dept of Pulmonary Diseases, Medical Centre Alkmaar, Alkmaar, The Netherlands</nlm:aff>
<country xml:lang="fr">Pays-Bas</country>
<wicri:regionArea>Dept of Pulmonary Diseases, Medical Centre Alkmaar, Alkmaar</wicri:regionArea>
<wicri:noRegion>Alkmaar</wicri:noRegion>
</affiliation>
</author>
<author><name sortKey="Rademacher, Jessica" sort="Rademacher, Jessica" uniqKey="Rademacher J" first="Jessica" last="Rademacher">Jessica Rademacher</name>
<affiliation wicri:level="3"><nlm:aff id="af14">Dept of Respiratory Medicine, Hannover Medical School, Member of the German Centre for Lung Research, Hannover, Germany</nlm:aff>
<country xml:lang="fr">Allemagne</country>
<wicri:regionArea>Dept of Respiratory Medicine, Hannover Medical School, Member of the German Centre for Lung Research, Hannover</wicri:regionArea>
<placeName><region type="land" nuts="2">Basse-Saxe</region>
<settlement type="city">Hanovre</settlement>
</placeName>
</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 wicri:level="4"><nlm:aff id="af17">Royal Infirmary of Edinburgh, University of Edinburgh, Edinburgh, UK</nlm:aff>
<country xml:lang="fr">Royaume-Uni</country>
<wicri:regionArea>Royal Infirmary of Edinburgh, University of Edinburgh, Edinburgh</wicri:regionArea>
<placeName><settlement type="city">Édimbourg</settlement>
<region type="country">Écosse</region>
<settlement type="city">Édimbourg</settlement>
</placeName>
<orgName type="university">Université d'Édimbourg</orgName>
</affiliation>
</author>
<author><name sortKey="Aksamit, Timothy" sort="Aksamit, Timothy" uniqKey="Aksamit T" first="Timothy" last="Aksamit">Timothy Aksamit</name>
<affiliation wicri:level="2"><nlm:aff id="af18">Mayo Clinic College of Medicine, Rochester, MN, USA</nlm:aff>
<country xml:lang="fr">États-Unis</country>
<wicri:regionArea>Mayo Clinic College of Medicine, Rochester, MN</wicri:regionArea>
<placeName><region type="state">Minnesota</region>
</placeName>
</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 wicri:level="2"><nlm:aff id="af19">Division of Pulmonary, Critical Care and Sleep Medicine, Georgetown University Medical Center, Washington, DC, USA</nlm:aff>
<country xml:lang="fr">États-Unis</country>
<wicri:regionArea>Division of Pulmonary, Critical Care and Sleep Medicine, Georgetown University Medical Center, Washington, DC</wicri:regionArea>
<placeName><region type="state">District de Columbia</region>
</placeName>
</affiliation>
</author>
<author><name sortKey="Morgan, Lucy" sort="Morgan, Lucy" uniqKey="Morgan L" first="Lucy" last="Morgan">Lucy Morgan</name>
<affiliation wicri:level="4"><nlm:aff id="af20">Dept of Respiratory Medicine, Concord Hospital, Concord Clinical School, University of Sydney, Sydney, Australia</nlm:aff>
<country xml:lang="fr">Australie</country>
<wicri:regionArea>Dept of Respiratory Medicine, Concord Hospital, Concord Clinical School, University of Sydney, Sydney</wicri:regionArea>
<placeName><settlement type="city">Sydney</settlement>
<region type="état">Nouvelle-Galles du Sud</region>
<settlement type="city">Sydney</settlement>
</placeName>
<orgName type="university">Université de Sydney</orgName>
</affiliation>
</author>
<author><name sortKey="Milenkovic, Branislava" sort="Milenkovic, Branislava" uniqKey="Milenkovic B" first="Branislava" last="Milenkovic">Branislava Milenkovic</name>
<affiliation wicri:level="1"><nlm:aff id="af21">Faculty of Medicine, University of Belgrade, Belgrade, Serbia</nlm:aff>
<country xml:lang="fr">Serbie</country>
<wicri:regionArea>Faculty of Medicine, University of Belgrade, Belgrade</wicri:regionArea>
<wicri:noRegion>Belgrade</wicri:noRegion>
</affiliation>
<affiliation wicri:level="1"><nlm:aff id="af22">Clinic for Pulmonary Diseases, Clinical Center of Serbia, Belgrade, Serbia</nlm:aff>
<country xml:lang="fr">Serbie</country>
<wicri:regionArea>Clinic for Pulmonary Diseases, Clinical Center of Serbia, Belgrade</wicri:regionArea>
<wicri:noRegion>Belgrade</wicri:noRegion>
</affiliation>
</author>
<author><name sortKey="Tramma, Leandro" sort="Tramma, Leandro" uniqKey="Tramma L" first="Leandro" last="Tramma">Leandro Tramma</name>
<affiliation wicri:level="1"><nlm:aff id="af1">College of Medicine, University of Dundee, Ninewells Hospital and Medical School, Dundee, UK</nlm:aff>
<country xml:lang="fr">Royaume-Uni</country>
<wicri:regionArea>College of Medicine, University of Dundee, Ninewells Hospital and Medical School, Dundee</wicri:regionArea>
<wicri:noRegion>Dundee</wicri:noRegion>
</affiliation>
</author>
<author><name sortKey="Neves, Joao" sort="Neves, Joao" uniqKey="Neves J" first="Joao" last="Neves">Joao Neves</name>
<affiliation wicri:level="1"><nlm:aff id="af23">Medicina Interna, Centro Hospitalar do Porto, Porto, Portugal</nlm:aff>
<country xml:lang="fr">Portugal</country>
<wicri:regionArea>Medicina Interna, Centro Hospitalar do Porto, Porto</wicri:regionArea>
<wicri:noRegion>Porto</wicri:noRegion>
</affiliation>
</author>
<author><name sortKey="Menendez, Rosario" sort="Menendez, Rosario" uniqKey="Menendez R" first="Rosario" last="Menendez">Rosario Menendez</name>
<affiliation wicri:level="1"><nlm:aff id="af24">Pneumology Service, Universitary and Polytechnic Hospital La Fe, Valencia, Spain</nlm:aff>
<country xml:lang="fr">Espagne</country>
<wicri:regionArea>Pneumology Service, Universitary and Polytechnic Hospital La Fe, Valencia</wicri:regionArea>
<wicri:noRegion>Valencia</wicri:noRegion>
</affiliation>
</author>
<author><name sortKey="Paggiaro, Perluigi" sort="Paggiaro, Perluigi" uniqKey="Paggiaro P" first="Perluigi" last="Paggiaro">Perluigi Paggiaro</name>
<affiliation wicri:level="4"><nlm:aff id="af25">Dept of Surgery, Medicine, Molecular Biology and Critical Care, University of Pisa, Pisa, Italy</nlm:aff>
<country xml:lang="fr">Italie</country>
<wicri:regionArea>Dept of Surgery, Medicine, Molecular Biology and Critical Care, University of Pisa, Pisa</wicri:regionArea>
<placeName><settlement type="city">Pise</settlement>
<region nuts="2">Toscane</region>
<settlement type="city">Pise</settlement>
</placeName>
<orgName type="university">Université de Pise</orgName>
</affiliation>
</author>
<author><name sortKey="Botnaru, Victor" sort="Botnaru, Victor" uniqKey="Botnaru V" first="Victor" last="Botnaru">Victor Botnaru</name>
<affiliation><nlm:aff id="af26">Division of Pneumology, Dept of Internal Medicine, State Medical University of Medicine and Pharmacy “Nicolae Testemitanu”, Chisinau, Republic of Moldova</nlm:aff>
<wicri:noCountry code="subfield">Republic of Moldova</wicri:noCountry>
</affiliation>
</author>
<author><name sortKey="Skrgat, Sabina" sort="Skrgat, Sabina" uniqKey="Skrgat S" first="Sabina" last="Skrgat">Sabina Skrgat</name>
<affiliation wicri:level="1"><nlm:aff id="af27">University Clinic of Respiratory and Allergic Diseases Golnik, Golnik, Slovenia</nlm:aff>
<country xml:lang="fr">Slovénie</country>
<wicri:regionArea>University Clinic of Respiratory and Allergic Diseases Golnik, Golnik</wicri:regionArea>
<wicri:noRegion>Golnik</wicri:noRegion>
</affiliation>
</author>
<author><name sortKey="Wilson, Robert" sort="Wilson, Robert" uniqKey="Wilson R" first="Robert" last="Wilson">Robert Wilson</name>
<affiliation wicri:level="3"><nlm:aff id="af5">Host Defence Unit, Royal Brompton Hospital, London, UK</nlm:aff>
<country xml:lang="fr">Royaume-Uni</country>
<wicri:regionArea>Host Defence Unit, Royal Brompton Hospital, London</wicri:regionArea>
<placeName><settlement type="city">Londres</settlement>
<region type="country">Angleterre</region>
<region type="région" nuts="1">Grand Londres</region>
</placeName>
</affiliation>
</author>
<author><name sortKey="Goeminne, Pieter" sort="Goeminne, Pieter" uniqKey="Goeminne P" first="Pieter" last="Goeminne">Pieter Goeminne</name>
<affiliation wicri:level="1"><nlm:aff id="af28">Dept of Respiratory Medicine, AZ Nikolaas, Sint-Niklaas, Belgium</nlm:aff>
<country xml:lang="fr">Belgique</country>
<wicri:regionArea>Dept of Respiratory Medicine, AZ Nikolaas, Sint-Niklaas</wicri:regionArea>
<wicri:noRegion>Sint-Niklaas</wicri:noRegion>
</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 wicri:level="1"><nlm:aff id="af29">Institute of Cellular Medicine, Newcastle University, Newcastle upon Tyne, UK</nlm:aff>
<country xml:lang="fr">Royaume-Uni</country>
<wicri:regionArea>Institute of Cellular Medicine, Newcastle University, Newcastle upon Tyne</wicri:regionArea>
<wicri:noRegion>Newcastle upon Tyne</wicri:noRegion>
</affiliation>
<affiliation wicri:level="1"><nlm:aff id="af30">Bronchiectasis Service, Freeman Hospital, Newcastle upon Tyne, UK</nlm:aff>
<country xml:lang="fr">Royaume-Uni</country>
<wicri:regionArea>Bronchiectasis Service, Freeman Hospital, Newcastle upon Tyne</wicri:regionArea>
<wicri:noRegion>Newcastle upon Tyne</wicri:noRegion>
</affiliation>
</author>
<author><name sortKey="Welte, Tobias" sort="Welte, Tobias" uniqKey="Welte T" first="Tobias" last="Welte">Tobias Welte</name>
<affiliation wicri:level="3"><nlm:aff id="af14">Dept of Respiratory Medicine, Hannover Medical School, Member of the German Centre for Lung Research, Hannover, Germany</nlm:aff>
<country xml:lang="fr">Allemagne</country>
<wicri:regionArea>Dept of Respiratory Medicine, Hannover Medical School, Member of the German Centre for Lung Research, Hannover</wicri:regionArea>
<placeName><region type="land" nuts="2">Basse-Saxe</region>
<settlement type="city">Hanovre</settlement>
</placeName>
</affiliation>
</author>
<author><name sortKey="Torres, Antoni" sort="Torres, Antoni" uniqKey="Torres A" first="Antoni" last="Torres">Antoni Torres</name>
<affiliation wicri:level="3"><nlm:aff id="af3">Fundaciò Clìnic, IDIBAPS, CIBERES, Hospital Clinic de Barcelona, Barcelona, Spain</nlm:aff>
<country xml:lang="fr">Espagne</country>
<wicri:regionArea>Fundaciò Clìnic, IDIBAPS, CIBERES, Hospital Clinic de Barcelona, Barcelona</wicri:regionArea>
<placeName><settlement type="city">Barcelone</settlement>
<region nuts="2" type="region">Catalogne</region>
</placeName>
</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 wicri:level="1"><nlm:aff id="af31">School of Medicine, Dentistry and Biomedical Sciences, Queen's University of Belfast, Belfast, UK</nlm:aff>
<country xml:lang="fr">Royaume-Uni</country>
<wicri:regionArea>School of Medicine, Dentistry and Biomedical Sciences, Queen's University of Belfast, Belfast</wicri:regionArea>
<wicri:noRegion>Belfast</wicri:noRegion>
</affiliation>
</author>
<author><name sortKey="Blasi, Francesco" sort="Blasi, Francesco" uniqKey="Blasi F" first="Francesco" last="Blasi">Francesco Blasi</name>
<affiliation wicri:level="3"><nlm:aff id="af32">Respiratory Unit, IRCCS Fondazione Cà Granda Milano, Dept of Pathophysiology and Transplantation, University of Milan, Milan, Italy</nlm:aff>
<country xml:lang="fr">Italie</country>
<wicri:regionArea>Respiratory Unit, IRCCS Fondazione Cà Granda Milano, Dept of Pathophysiology and Transplantation, University of Milan, Milan</wicri:regionArea>
<placeName><settlement type="city">Milan</settlement>
<region nuts="2">Lombardie</region>
</placeName>
</affiliation>
</author>
</analytic>
<series><title level="j">ERJ Open Research</title>
<idno type="eISSN">2312-0541</idno>
<imprint><date when="2016">2016</date>
</imprint>
</series>
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<front><div type="abstract" xml:lang="en"><p>Bronchiectasis is one of the most neglected diseases in respiratory medicine. There are no approved therapies and few large-scale, representative epidemiological studies.</p>
<p>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.</p>
<p>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.</p>
<p>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.</p>
</div>
</front>
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<pmc article-type="research-article"><pmc-dir>properties open_access</pmc-dir>
<front><journal-meta><journal-id journal-id-type="nlm-ta">ERJ Open Res</journal-id>
<journal-id journal-id-type="iso-abbrev">ERJ Open Res</journal-id>
<journal-id journal-id-type="publisher-id">ERJOR</journal-id>
<journal-id journal-id-type="hwp">erjor</journal-id>
<journal-title-group><journal-title>ERJ Open Research</journal-title>
</journal-title-group>
<issn pub-type="epub">2312-0541</issn>
<publisher><publisher-name>European Respiratory Society</publisher-name>
</publisher>
</journal-meta>
<article-meta><article-id pub-id-type="pmid">27730179</article-id>
<article-id pub-id-type="pmc">5005162</article-id>
<article-id pub-id-type="doi">10.1183/23120541.00081-2015</article-id>
<article-id pub-id-type="publisher-id">00081-2015</article-id>
<article-categories><subj-group subj-group-type="heading"><subject>Study Protocol</subject>
</subj-group>
<subj-group subj-group-type="hwp-journal-coll"><subject>3</subject>
</subj-group>
</article-categories>
<title-group><article-title>The EMBARC European Bronchiectasis Registry: protocol for an international observational study</article-title>
<alt-title alt-title-type="short">The EMBARC European Bronchiectasis Registry</alt-title>
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<xref ref-type="aff" rid="af5">5</xref>
</contrib>
<contrib contrib-type="author"><name><surname>Goeminne</surname>
<given-names>Pieter</given-names>
</name>
<xref ref-type="aff" rid="af28">28</xref>
</contrib>
<contrib contrib-type="author"><name><surname>De Soyza</surname>
<given-names>Anthony</given-names>
</name>
<xref ref-type="aff" rid="af29">29</xref>
<xref ref-type="aff" rid="af30">30</xref>
</contrib>
<contrib contrib-type="author"><name><surname>Welte</surname>
<given-names>Tobias</given-names>
</name>
<xref ref-type="aff" rid="af14">14</xref>
</contrib>
<contrib contrib-type="author"><name><surname>Torres</surname>
<given-names>Antoni</given-names>
</name>
<xref ref-type="aff" rid="af3">3</xref>
</contrib>
<contrib contrib-type="author"><name><surname>Elborn</surname>
<given-names>J. Stuart</given-names>
</name>
<xref ref-type="aff" rid="af31">31</xref>
</contrib>
<contrib contrib-type="author"><name><surname>Blasi</surname>
<given-names>Francesco</given-names>
</name>
<xref ref-type="aff" rid="af32">32</xref>
</contrib>
<on-behalf-of>on behalf of EMBARC.</on-behalf-of>
</contrib-group>
<aff id="af1"><label>1</label>
College of Medicine, University of Dundee, Ninewells Hospital and Medical School, Dundee, UK</aff>
<aff id="af2"><label>2</label>
Dept of Health Science, University of Milan Bicocca, Clinica Pneumologica, AO San Gerardo, Monza, Italy</aff>
<aff id="af3"><label>3</label>
Fundaciò Clìnic, IDIBAPS, CIBERES, Hospital Clinic de Barcelona, Barcelona, Spain</aff>
<aff id="af4"><label>4</label>
Bronchiectasis Group, Girona Biomedical Research Institute (IDIBGI), Dr Trueta University Hospital, Girona, Spain</aff>
<aff id="af5"><label>5</label>
Host Defence Unit, Royal Brompton Hospital, London, UK</aff>
<aff id="af6"><label>6</label>
5th Pulmonary Department, “Sotiria” Chest Hospital, Athens, Greece</aff>
<aff id="af7"><label>7</label>
Leeds Centre for Respiratory Medicine, St James's Hospital, Leeds, UK</aff>
<aff id="af8"><label>8</label>
Dept of Pulmonary Medicine, Erasmus MC Rotterdam, Rotterdam, The Netherlands</aff>
<aff id="af9"><label>9</label>
Dept of Respiratory Medicine, Maastricht University Medical Center, Maastricht, The Netherlands</aff>
<aff id="af10"><label>10</label>
Pôle des Voies Respiratoires, Hôpital de Larrey, CHU de Toulouse, Toulouse, France</aff>
<aff id="af11"><label>11</label>
European Lung Foundation, Sheffield, UK</aff>
<aff id="af12"><label>12</label>
Dept of Respiratory Medicine, Mater Dei Hospital, Msida, Malta</aff>
<aff id="af13"><label>13</label>
Pulmonary Institute, Carmel Medical Center, Haifa, Israel</aff>
<aff id="af14"><label>14</label>
Dept of Respiratory Medicine, Hannover Medical School, Member of the German Centre for Lung Research, Hannover, Germany</aff>
<aff id="af15"><label>15</label>
Cambridge Centre for Lung Infection, Papworth Hospital, Cambridge, UK</aff>
<aff id="af16"><label>16</label>
Dept of Pulmonary Diseases, Medical Centre Alkmaar, Alkmaar, The Netherlands</aff>
<aff id="af17"><label>17</label>
Royal Infirmary of Edinburgh, University of Edinburgh, Edinburgh, UK</aff>
<aff id="af18"><label>18</label>
Mayo Clinic College of Medicine, Rochester, MN, USA</aff>
<aff id="af19"><label>19</label>
Division of Pulmonary, Critical Care and Sleep Medicine, Georgetown University Medical Center, Washington, DC, USA</aff>
<aff id="af20"><label>20</label>
Dept of Respiratory Medicine, Concord Hospital, Concord Clinical School, University of Sydney, Sydney, Australia</aff>
<aff id="af21"><label>21</label>
Faculty of Medicine, University of Belgrade, Belgrade, Serbia</aff>
<aff id="af22"><label>22</label>
Clinic for Pulmonary Diseases, Clinical Center of Serbia, Belgrade, Serbia</aff>
<aff id="af23"><label>23</label>
Medicina Interna, Centro Hospitalar do Porto, Porto, Portugal</aff>
<aff id="af24"><label>24</label>
Pneumology Service, Universitary and Polytechnic Hospital La Fe, Valencia, Spain</aff>
<aff id="af25"><label>25</label>
Dept of Surgery, Medicine, Molecular Biology and Critical Care, University of Pisa, Pisa, Italy</aff>
<aff id="af26"><label>26</label>
Division of Pneumology, Dept of Internal Medicine, State Medical University of Medicine and Pharmacy “Nicolae Testemitanu”, Chisinau, Republic of Moldova</aff>
<aff id="af27"><label>27</label>
University Clinic of Respiratory and Allergic Diseases Golnik, Golnik, Slovenia</aff>
<aff id="af28"><label>28</label>
Dept of Respiratory Medicine, AZ Nikolaas, Sint-Niklaas, Belgium</aff>
<aff id="af29"><label>29</label>
Institute of Cellular Medicine, Newcastle University, Newcastle upon Tyne, UK</aff>
<aff id="af30"><label>30</label>
Bronchiectasis Service, Freeman Hospital, Newcastle upon Tyne, UK</aff>
<aff id="af31"><label>31</label>
School of Medicine, Dentistry and Biomedical Sciences, Queen's University of Belfast, Belfast, UK</aff>
<aff id="af32"><label>32</label>
Respiratory Unit, IRCCS Fondazione Cà Granda Milano, Dept of Pathophysiology and Transplantation, University of Milan, Milan, Italy</aff>
<aff id="af33"><label>33</label>
These authors contributed equally</aff>
<author-notes><corresp id="cor1">James D. Chalmers, College of Medicine, University of Dundee, Ninewells Hospital and Medical School, Dundee, DD1 9SY, UK. E-mail: <email>jchalmers@dundee.ac.uk</email>
</corresp>
</author-notes>
<pub-date pub-type="collection"><month>1</month>
<year>2016</year>
</pub-date>
<pub-date pub-type="epub"><day>20</day>
<month>1</month>
<year>2016</year>
</pub-date>
<volume>2</volume>
<issue>1</issue>
<elocation-id>00081-2015</elocation-id>
<history><date date-type="received"><day>29</day>
<month>10</month>
<year>2015</year>
</date>
<date date-type="accepted"><day>02</day>
<month>11</month>
<year>2015</year>
</date>
</history>
<permissions><copyright-statement>Copyright ©ERS 2015</copyright-statement>
<copyright-year>2015</copyright-year>
<license license-type="open-access" xlink:href="http://creativecommons.org/licenses/by-nc/4.0/"><license-p>The content of this work is ©the authors or their employers. Design and branding are ©ERS 2015. This article is open access and distributed under the terms of the Creative Commons Attribution Non-Commercial Licence 4.0.</license-p>
</license>
</permissions>
<abstract><p>Bronchiectasis is one of the most neglected diseases in respiratory medicine. There are no approved therapies and few large-scale, representative epidemiological studies.</p>
<p>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.</p>
<p>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.</p>
<p>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.</p>
</abstract>
<abstract abstract-type="short"><p><bold>The European Bronchiectasis Registry will recruit 10 000 patients over 5 years</bold>
<ext-link ext-link-type="uri" xlink:href="http://ow.ly/Ul7Pd">http://ow.ly/Ul7Pd</ext-link>
</p>
</abstract>
<funding-group><award-group id="funding-1"><funding-source>COPD Foundation<named-content content-type="funder-id">http://doi.org/10.13039/100008184</named-content>
</funding-source>
</award-group>
<award-group id="funding-2"><funding-source>EU Innovative Medicines Initiative<named-content content-type="funder-id">http://doi.org/</named-content>
</funding-source>
<award-id>iABC</award-id>
</award-group>
<award-group id="funding-3"><funding-source>Aradigm Corporation<named-content content-type="funder-id">http://doi.org/</named-content>
</funding-source>
</award-group>
<award-group id="funding-4"><funding-source>European Respiratory Society<named-content content-type="funder-id">http://doi.org/10.13039/100008593</named-content>
</funding-source>
<award-id>CRC 2013-06</award-id>
</award-group>
<award-group id="funding-5"><funding-source>Bayer HealthCare<named-content content-type="funder-id">http://doi.org/10.13039/501100000801</named-content>
</funding-source>
</award-group>
</funding-group>
</article-meta>
</front>
</pmc>
<affiliations><list><country><li>Allemagne</li>
<li>Australie</li>
<li>Belgique</li>
<li>Espagne</li>
<li>France</li>
<li>Grèce</li>
<li>Israël</li>
<li>Italie</li>
<li>Malte</li>
<li>Pays-Bas</li>
<li>Portugal</li>
<li>Royaume-Uni</li>
<li>Serbie</li>
<li>Slovénie</li>
<li>États-Unis</li>
</country>
<region><li>Angleterre</li>
<li>Attique (région)</li>
<li>Basse-Saxe</li>
<li>Catalogne</li>
<li>District de Columbia</li>
<li>Grand Londres</li>
<li>Hollande-Méridionale</li>
<li>Lombardie</li>
<li>Midi-Pyrénées</li>
<li>Minnesota</li>
<li>Nouvelle-Galles du Sud</li>
<li>Occitanie (région administrative)</li>
<li>Toscane</li>
<li>Écosse</li>
</region>
<settlement><li>Athènes</li>
<li>Barcelone</li>
<li>Hanovre</li>
<li>Londres</li>
<li>Milan</li>
<li>Pise</li>
<li>Rotterdam</li>
<li>Sydney</li>
<li>Toulouse</li>
<li>Édimbourg</li>
</settlement>
<orgName><li>Université d'Édimbourg</li>
<li>Université de Pise</li>
<li>Université de Sydney</li>
</orgName>
</list>
<tree><noCountry><name sortKey="Botnaru, Victor" sort="Botnaru, Victor" uniqKey="Botnaru V" first="Victor" last="Botnaru">Victor Botnaru</name>
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<name sortKey="Elborn, J Stuart" sort="Elborn, J Stuart" uniqKey="Elborn J" first="J. Stuart" last="Elborn">J. Stuart Elborn</name>
<name sortKey="Haworth, Charles" sort="Haworth, Charles" uniqKey="Haworth C" first="Charles" last="Haworth">Charles Haworth</name>
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<name sortKey="Loebinger, Michael" sort="Loebinger, Michael" uniqKey="Loebinger M" first="Michael" last="Loebinger">Michael Loebinger</name>
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<name sortKey="Vendrell, Montserrat" sort="Vendrell, Montserrat" uniqKey="Vendrell M" first="Montserrat" last="Vendrell">Montserrat Vendrell</name>
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<name sortKey="Rohde, Gernot" sort="Rohde, Gernot" uniqKey="Rohde G" first="Gernot" last="Rohde">Gernot Rohde</name>
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<country name="Israël"><noRegion><name sortKey="Shteinberg, Michal" sort="Shteinberg, Michal" uniqKey="Shteinberg M" first="Michal" last="Shteinberg">Michal Shteinberg</name>
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<name sortKey="O Donnell, Anne" sort="O Donnell, Anne" uniqKey="O Donnell A" first="Anne" last="O'Donnell">Anne O'Donnell</name>
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</record>
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