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

James D. Chalmers (Lead / Corresponding author), 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 AksamitAnne 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, on behalf of EMBARC

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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.

Original languageEnglish
Article number00081-2015
Pages (from-to)1-9
Number of pages9
JournalERJ Open Research
Volume2
Issue number1
DOIs
Publication statusPublished - Jan 2016

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Chalmers, J. D., Aliberti, S., Polverino, E., Vendrell, M., Crichton, M., Loebinger, M., Dimakou, K., Clifton, I., van der Eerden, M., Rohde, G., Murris-Espin, M., Masefield, S., Gerada, E., Shteinberg, M., Ringshausen, F., Haworth, C., Boersma, W., Rademacher, J., Hill, A. T., ... on behalf of EMBARC (2016). The EMBARC European Bronchiectasis Registry: protocol for an international observational study. ERJ Open Research, 2(1), 1-9. [00081-2015]. https://doi.org/10.1183/23120541.00081-2015