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

James D Chalmers¹, Stefano Aliberti², Eva Polverino³, Montserrat Vendrell⁴, Megan Crichton⁵, Michael Loebinger⁶, Katerina Dimakou⁷, Ian Clifton⁸, Menno van der Eerden⁹, Gernot Rohde¹⁰, Marlene Murris-Espin¹¹, Sarah Masefield¹², Eleanor Gerada¹³, Michal Shteinberg¹⁴, Felix Ringshausen¹⁵, Charles Haworth¹⁶, Wim Boersma¹⁷, Jessica Rademacher¹⁵, Adam T Hill¹⁸, Timothy Aksamit¹⁹, Anne O'Donnell²⁰, Lucy Morgan²¹, Branislava Milenkovic²², Leandro Tramma⁵, Joao Neves²³, Rosario Menendez²⁴, Perluigi Paggiaro²⁵, Victor Botnaru²⁶, Sabina Skrgat²⁷, Robert Wilson⁶, Pieter Goeminne²⁸, Anthony De Soyza²⁹, Tobias Welte¹⁵, Antoni Torres³⁰, J Stuart Elborn³¹, Francesco Blasi³²

Affiliations

¹ College of Medicine, University of Dundee, Ninewells Hospital and Medical School, Dundee, UK; These authors contributed equally.
² Dept of Health Science, University of Milan Bicocca, Clinica Pneumologica, AO San Gerardo, Monza, Italy; These authors contributed equally.
³ Fundaciò Clìnic, IDIBAPS, CIBERES, Hospital Clinic de Barcelona, Barcelona, Spain; These authors contributed equally.
⁴ Bronchiectasis Group, Girona Biomedical Research Institute (IDIBGI), Dr Trueta University Hospital, Girona, Spain.
⁵ College of Medicine, University of Dundee, Ninewells Hospital and Medical School, Dundee, UK.
⁶ Host Defence Unit, Royal Brompton Hospital, London, UK.
⁷ 5th Pulmonary Department, "Sotiria" Chest Hospital, Athens, Greece.
⁸ Leeds Centre for Respiratory Medicine, St James's Hospital, Leeds, UK.
⁹ Dept of Pulmonary Medicine, Erasmus MC Rotterdam, Rotterdam, The Netherlands.
¹⁰ Dept of Respiratory Medicine, Maastricht University Medical Center, Maastricht, The Netherlands.
¹¹ Pôle des Voies Respiratoires, Hôpital de Larrey, CHU de Toulouse, Toulouse, France.
¹² European Lung Foundation, Sheffield, UK.
¹³ Dept of Respiratory Medicine, Mater Dei Hospital, Msida, Malta.
¹⁴ Pulmonary Institute, Carmel Medical Center, Haifa, Israel.
¹⁵ Dept of Respiratory Medicine, Hannover Medical School, Member of the German Centre for Lung Research, Hannover, Germany.
¹⁶ Cambridge Centre for Lung Infection, Papworth Hospital, Cambridge, UK.
¹⁷ Dept of Pulmonary Diseases, Medical Centre Alkmaar, Alkmaar, The Netherlands.
¹⁸ Royal Infirmary of Edinburgh, University of Edinburgh, Edinburgh, UK.
¹⁹ Mayo Clinic College of Medicine, Rochester, MN, USA.
²⁰ Division of Pulmonary, Critical Care and Sleep Medicine, Georgetown University Medical Center, Washington, DC, USA.
²¹ Dept of Respiratory Medicine, Concord Hospital, Concord Clinical School, University of Sydney, Sydney, Australia.
²² Faculty of Medicine, University of Belgrade, Belgrade, Serbia; Clinic for Pulmonary Diseases, Clinical Center of Serbia, Belgrade, Serbia.
²³ Medicina Interna, Centro Hospitalar do Porto, Porto, Portugal.
²⁴ Pneumology Service, Universitary and Polytechnic Hospital La Fe, Valencia, Spain.
²⁵ Dept of Surgery, Medicine, Molecular Biology and Critical Care, University of Pisa, Pisa, Italy.
²⁶ Division of Pneumology, Dept of Internal Medicine, State Medical University of Medicine and Pharmacy "Nicolae Testemitanu", Chisinau, Republic of Moldova.
²⁷ University Clinic of Respiratory and Allergic Diseases Golnik, Golnik, Slovenia.
²⁸ Dept of Respiratory Medicine, AZ Nikolaas, Sint-Niklaas, Belgium.
²⁹ Institute of Cellular Medicine, Newcastle University, Newcastle upon Tyne, UK; Bronchiectasis Service, Freeman Hospital, Newcastle upon Tyne, UK.
³⁰ Fundaciò Clìnic, IDIBAPS, CIBERES, Hospital Clinic de Barcelona, Barcelona, Spain.
³¹ School of Medicine, Dentistry and Biomedical Sciences, Queen's University of Belfast, Belfast, UK.
³² Respiratory Unit, IRCCS Fondazione Cà Granda Milano, Dept of Pathophysiology and Transplantation, University of Milan, Milan, Italy.

PMID: 27730179
PMCID: PMC5005162
DOI: 10.1183/23120541.00081-2015

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

James D Chalmers et al. ERJ Open Res. 2016.

. 2016 Jan 20;2(1):00081-2015.

doi: 10.1183/23120541.00081-2015. eCollection 2016 Jan.

Authors

Affiliations

¹ College of Medicine, University of Dundee, Ninewells Hospital and Medical School, Dundee, UK; These authors contributed equally.
² Dept of Health Science, University of Milan Bicocca, Clinica Pneumologica, AO San Gerardo, Monza, Italy; These authors contributed equally.
³ Fundaciò Clìnic, IDIBAPS, CIBERES, Hospital Clinic de Barcelona, Barcelona, Spain; These authors contributed equally.
⁴ Bronchiectasis Group, Girona Biomedical Research Institute (IDIBGI), Dr Trueta University Hospital, Girona, Spain.
⁵ College of Medicine, University of Dundee, Ninewells Hospital and Medical School, Dundee, UK.
⁶ Host Defence Unit, Royal Brompton Hospital, London, UK.
⁷ 5th Pulmonary Department, "Sotiria" Chest Hospital, Athens, Greece.
⁸ Leeds Centre for Respiratory Medicine, St James's Hospital, Leeds, UK.
⁹ Dept of Pulmonary Medicine, Erasmus MC Rotterdam, Rotterdam, The Netherlands.
¹⁰ Dept of Respiratory Medicine, Maastricht University Medical Center, Maastricht, The Netherlands.
¹¹ Pôle des Voies Respiratoires, Hôpital de Larrey, CHU de Toulouse, Toulouse, France.
¹² European Lung Foundation, Sheffield, UK.
¹³ Dept of Respiratory Medicine, Mater Dei Hospital, Msida, Malta.
¹⁴ Pulmonary Institute, Carmel Medical Center, Haifa, Israel.
¹⁵ Dept of Respiratory Medicine, Hannover Medical School, Member of the German Centre for Lung Research, Hannover, Germany.
¹⁶ Cambridge Centre for Lung Infection, Papworth Hospital, Cambridge, UK.
¹⁷ Dept of Pulmonary Diseases, Medical Centre Alkmaar, Alkmaar, The Netherlands.
¹⁸ Royal Infirmary of Edinburgh, University of Edinburgh, Edinburgh, UK.
¹⁹ Mayo Clinic College of Medicine, Rochester, MN, USA.
²⁰ Division of Pulmonary, Critical Care and Sleep Medicine, Georgetown University Medical Center, Washington, DC, USA.
²¹ Dept of Respiratory Medicine, Concord Hospital, Concord Clinical School, University of Sydney, Sydney, Australia.
²² Faculty of Medicine, University of Belgrade, Belgrade, Serbia; Clinic for Pulmonary Diseases, Clinical Center of Serbia, Belgrade, Serbia.
²³ Medicina Interna, Centro Hospitalar do Porto, Porto, Portugal.
²⁴ Pneumology Service, Universitary and Polytechnic Hospital La Fe, Valencia, Spain.
²⁵ Dept of Surgery, Medicine, Molecular Biology and Critical Care, University of Pisa, Pisa, Italy.
²⁶ Division of Pneumology, Dept of Internal Medicine, State Medical University of Medicine and Pharmacy "Nicolae Testemitanu", Chisinau, Republic of Moldova.
²⁷ University Clinic of Respiratory and Allergic Diseases Golnik, Golnik, Slovenia.
²⁸ Dept of Respiratory Medicine, AZ Nikolaas, Sint-Niklaas, Belgium.
²⁹ Institute of Cellular Medicine, Newcastle University, Newcastle upon Tyne, UK; Bronchiectasis Service, Freeman Hospital, Newcastle upon Tyne, UK.
³⁰ Fundaciò Clìnic, IDIBAPS, CIBERES, Hospital Clinic de Barcelona, Barcelona, Spain.
³¹ School of Medicine, Dentistry and Biomedical Sciences, Queen's University of Belfast, Belfast, UK.
³² Respiratory Unit, IRCCS Fondazione Cà Granda Milano, Dept of Pathophysiology and Transplantation, University of Milan, Milan, Italy.

PMID: 27730179
PMCID: PMC5005162
DOI: 10.1183/23120541.00081-2015

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.

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Conflict of interest statement

S. Masefield is an employee of the European Respiratory Society. Disclosures can be found alongside this article at openres.ersjournals.com

Figures

**FIGURE 1**
Study flowchart. CT: computed tomography.

**FIGURE 2**
The European Multicentre Bronchiectasis Audit and Research Collaboration (EMBARC) data collection platform. Image courtesy of EMBARC and the Health Informatics Centre (University of Dundee, Dundee, UK).

**FIGURE 3**
Distribution of EMBARC (European Multicentre Bronchiectasis Audit and Research Collaboration) sites across Europe.

See this image and copyright information in PMC

References

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1. Elborn JS. Bronchiectasis. In: Gibson GJ, Loddenkemper R, Sibille Y, et al., eds. The European Lung White Book. Sheffield, European Respiratory Society, 2013.
1. Chalmers JD, Aliberti S, Blasi F. Bronchiectasis in adults. Eur Respir J 2015; 45: 1446–1462. - PubMed
1. Kelly MG, Murphy S, Elborn JS. Bronchiectasis in secondary care: a comprehensive profile of a neglected disease. Eur J Intern Med 2003; 14: 488–492. - PubMed
1. Chalmers JD, Loebinger M, Aliberti S. Challenges in the development of new therapies for bronchiectasis. Curr Opin Pharmacother 2015; 16: 833–850. - PubMed

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

Affiliations

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

Authors

Affiliations

Abstract

Conflict of interest statement

Figures

References

LinkOut - more resources

Full Text Sources

Other Literature Sources

Medical

Miscellaneous