ERJ Open Research (Jan 2016)
The EMBARC European Bronchiectasis Registry: protocol for an international observational study
- 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 Blasi
Affiliations
- James D. Chalmers
- College of Medicine, University of Dundee, Ninewells Hospital and Medical School, Dundee, UK
- Stefano Aliberti
- Dept of Health Science, University of Milan Bicocca, Clinica Pneumologica, AO San Gerardo, Monza, Italy
- Eva Polverino
- Fundaciò Clìnic, IDIBAPS, CIBERES, Hospital Clinic de Barcelona, Barcelona, Spain
- Montserrat Vendrell
- Bronchiectasis Group, Girona Biomedical Research Institute (IDIBGI), Dr Trueta University Hospital, Girona, Spain
- Megan Crichton
- College of Medicine, University of Dundee, Ninewells Hospital and Medical School, Dundee, UK
- Michael Loebinger
- Host Defence Unit, Royal Brompton Hospital, London, UK
- Katerina Dimakou
- 5th Pulmonary Department, “Sotiria” Chest Hospital, Athens, Greece
- Ian Clifton
- Leeds Centre for Respiratory Medicine, St James's Hospital, Leeds, UK
- Menno van der Eerden
- Dept of Pulmonary Medicine, Erasmus MC Rotterdam, Rotterdam, The Netherlands
- Gernot Rohde
- Dept of Respiratory Medicine, Maastricht University Medical Center, Maastricht, The Netherlands
- Marlene Murris-Espin
- Pôle des Voies Respiratoires, Hôpital de Larrey, CHU de Toulouse, Toulouse, France
- Sarah Masefield
- European Lung Foundation, Sheffield, UK
- Eleanor Gerada
- Dept of Respiratory Medicine, Mater Dei Hospital, Msida, Malta
- Michal Shteinberg
- Pulmonary Institute, Carmel Medical Center, Haifa, Israel
- Felix Ringshausen
- Dept of Respiratory Medicine, Hannover Medical School, Member of the German Centre for Lung Research, Hannover, Germany
- Charles Haworth
- Cambridge Centre for Lung Infection, Papworth Hospital, Cambridge, UK
- Wim Boersma
- Dept of Pulmonary Diseases, Medical Centre Alkmaar, Alkmaar, The Netherlands
- Jessica Rademacher
- Dept of Respiratory Medicine, Hannover Medical School, Member of the German Centre for Lung Research, Hannover, Germany
- Adam T. Hill
- Royal Infirmary of Edinburgh, University of Edinburgh, Edinburgh, UK
- Timothy Aksamit
- Mayo Clinic College of Medicine, Rochester, MN, USA
- Anne O'Donnell
- Division of Pulmonary, Critical Care and Sleep Medicine, Georgetown University Medical Center, Washington, DC, USA
- Lucy Morgan
- Dept of Respiratory Medicine, Concord Hospital, Concord Clinical School, University of Sydney, Sydney, Australia
- Branislava Milenkovic
- Faculty of Medicine, University of Belgrade, Belgrade, Serbia
- Leandro Tramma
- College of Medicine, University of Dundee, Ninewells Hospital and Medical School, Dundee, UK
- Joao Neves
- Medicina Interna, Centro Hospitalar do Porto, Porto, Portugal
- Rosario Menendez
- Pneumology Service, Universitary and Polytechnic Hospital La Fe, Valencia, Spain
- Perluigi Paggiaro
- Dept of Surgery, Medicine, Molecular Biology and Critical Care, University of Pisa, Pisa, Italy
- Victor Botnaru
- Division of Pneumology, Dept of Internal Medicine, State Medical University of Medicine and Pharmacy “Nicolae Testemitanu”, Chisinau, Republic of Moldova
- Sabina Skrgat
- University Clinic of Respiratory and Allergic Diseases Golnik, Golnik, Slovenia
- Robert Wilson
- Host Defence Unit, Royal Brompton Hospital, London, UK
- Pieter Goeminne
- Dept of Respiratory Medicine, AZ Nikolaas, Sint-Niklaas, Belgium
- Anthony De Soyza
- Institute of Cellular Medicine, Newcastle University, Newcastle upon Tyne, UK
- Tobias Welte
- Dept of Respiratory Medicine, Hannover Medical School, Member of the German Centre for Lung Research, Hannover, Germany
- Antoni Torres
- Fundaciò Clìnic, IDIBAPS, CIBERES, Hospital Clinic de Barcelona, Barcelona, Spain
- J. Stuart Elborn
- School of Medicine, Dentistry and Biomedical Sciences, Queen's University of Belfast, Belfast, UK
- Francesco Blasi
- Respiratory Unit, IRCCS Fondazione Cà Granda Milano, Dept of Pathophysiology and Transplantation, University of Milan, Milan, Italy
- DOI
- https://doi.org/10.1183/23120541.00081-2015
- Journal volume & issue
-
Vol. 2,
no. 1
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.
