title: The EMBARC European Bronchiectasis Registry: protocol for an international observational study.
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.
authors.affiliation: College of Medicine, University of Dundee, Ninewells Hospital and Medical School, Dundee, UK; These authors contributed equally.
authors.forename: James D
authors.initials: JD
authors.lastname: Chalmers
authors.affiliation: Dept of Health Science, University of Milan Bicocca, Clinica Pneumologica, AO San Gerardo, Monza, Italy; These authors contributed equally.
authors.forename: Stefano
authors.initials: S
authors.lastname: Aliberti
authors.affiliation: Fundaciò Clìnic, IDIBAPS, CIBERES, Hospital Clinic de Barcelona, Barcelona, Spain; These authors contributed equally.
authors.forename: Eva
authors.initials: E
authors.lastname: Polverino
authors.affiliation: Bronchiectasis Group, Girona Biomedical Research Institute (IDIBGI), Dr Trueta University Hospital, Girona, Spain.
authors.forename: Montserrat
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authors.lastname: Vendrell
authors.affiliation: College of Medicine, University of Dundee, Ninewells Hospital and Medical School, Dundee, UK.
authors.forename: Megan
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authors.lastname: Crichton
authors.affiliation: Host Defence Unit, Royal Brompton Hospital, London, UK.
authors.forename: Michael
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authors.lastname: Loebinger
authors.affiliation: 5th Pulmonary Department, "Sotiria" Chest Hospital, Athens, Greece.
authors.forename: Katerina
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authors.lastname: Dimakou
authors.affiliation: Leeds Centre for Respiratory Medicine, St James's Hospital, Leeds, UK.
authors.forename: Ian
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authors.affiliation: Dept of Pulmonary Medicine, Erasmus MC Rotterdam, Rotterdam, The Netherlands.
authors.forename: Menno
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authors.lastname: van der Eerden
authors.affiliation: Dept of Respiratory Medicine, Maastricht University Medical Center, Maastricht, The Netherlands.
authors.forename: Gernot
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authors.affiliation: Pôle des Voies Respiratoires, Hôpital de Larrey, CHU de Toulouse, Toulouse, France.
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authors.lastname: Murris-Espin
authors.affiliation: European Lung Foundation, Sheffield, UK.
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authors.lastname: Masefield
authors.affiliation: Dept of Respiratory Medicine, Mater Dei Hospital, Msida, Malta.
authors.forename: Eleanor
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authors.affiliation: Pulmonary Institute, Carmel Medical Center, Haifa, Israel.
authors.forename: Michal
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authors.affiliation: Dept of Respiratory Medicine, Hannover Medical School, Member of the German Centre for Lung Research, Hannover, Germany.
authors.forename: Felix
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authors.lastname: Ringshausen
authors.affiliation: Cambridge Centre for Lung Infection, Papworth Hospital, Cambridge, UK.
authors.forename: Charles
authors.initials: C
authors.lastname: Haworth
authors.affiliation: Dept of Pulmonary Diseases, Medical Centre Alkmaar, Alkmaar, The Netherlands.
authors.forename: Wim
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authors.affiliation: Dept of Respiratory Medicine, Hannover Medical School, Member of the German Centre for Lung Research, Hannover, Germany.
authors.forename: Jessica
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authors.lastname: Rademacher
authors.affiliation: Royal Infirmary of Edinburgh, University of Edinburgh, Edinburgh, UK.
authors.forename: Adam T
authors.initials: AT
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authors.affiliation: Mayo Clinic College of Medicine, Rochester, MN, USA.
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authors.affiliation: Division of Pulmonary, Critical Care and Sleep Medicine, Georgetown University Medical Center, Washington, DC, USA.
authors.forename: Anne
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authors.affiliation: Dept of Respiratory Medicine, Concord Hospital, Concord Clinical School, University of Sydney, Sydney, Australia.
authors.forename: Lucy
authors.initials: L
authors.lastname: Morgan
authors.affiliation: Faculty of Medicine, University of Belgrade, Belgrade, Serbia; Clinic for Pulmonary Diseases, Clinical Center of Serbia, Belgrade, Serbia.
authors.forename: Branislava
authors.initials: B
authors.lastname: Milenkovic
authors.affiliation: College of Medicine, University of Dundee, Ninewells Hospital and Medical School, Dundee, UK.
authors.forename: Leandro
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authors.affiliation: Medicina Interna, Centro Hospitalar do Porto, Porto, Portugal.
authors.forename: Joao
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authors.lastname: Neves
authors.affiliation: Pneumology Service, Universitary and Polytechnic Hospital La Fe, Valencia, Spain.
authors.forename: Rosario
authors.initials: R
authors.lastname: Menendez
authors.affiliation: Dept of Surgery, Medicine, Molecular Biology and Critical Care, University of Pisa, Pisa, Italy.
authors.forename: Perluigi
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authors.lastname: Paggiaro
authors.affiliation: Division of Pneumology, Dept of Internal Medicine, State Medical University of Medicine and Pharmacy "Nicolae Testemitanu", Chisinau, Republic of Moldova.
authors.forename: Victor
authors.initials: V
authors.lastname: Botnaru
authors.affiliation: University Clinic of Respiratory and Allergic Diseases Golnik, Golnik, Slovenia.
authors.forename: Sabina
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authors.lastname: Skrgat
authors.affiliation: Host Defence Unit, Royal Brompton Hospital, London, UK.
authors.forename: Robert
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authors.lastname: Wilson
authors.affiliation: Dept of Respiratory Medicine, AZ Nikolaas, Sint-Niklaas, Belgium.
authors.forename: Pieter
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authors.lastname: Goeminne
authors.affiliation: Institute of Cellular Medicine, Newcastle University, Newcastle upon Tyne, UK; Bronchiectasis Service, Freeman Hospital, Newcastle upon Tyne, UK.
authors.forename: Anthony
authors.initials: A
authors.lastname: De Soyza
authors.affiliation: Dept of Respiratory Medicine, Hannover Medical School, Member of the German Centre for Lung Research, Hannover, Germany.
authors.forename: Tobias
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authors.affiliation: Fundaciò Clìnic, IDIBAPS, CIBERES, Hospital Clinic de Barcelona, Barcelona, Spain.
authors.forename: Antoni
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authors.lastname: Torres
authors.affiliation: School of Medicine, Dentistry and Biomedical Sciences, Queen's University of Belfast, Belfast, UK.
authors.forename: J Stuart
authors.initials: JS
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authors.affiliation: Respiratory Unit, IRCCS Fondazione Cà Granda Milano, Dept of Pathophysiology and Transplantation, University of Milan, Milan, Italy.
authors.forename: Francesco
authors.initials: F
authors.lastname: Blasi