PT  - JOURNAL ARTICLE
AU  - Chalmers, James D.
AU  - Aliberti, Stefano
AU  - Polverino, Eva
AU  - Vendrell, Montserrat
AU  - Crichton, Megan
AU  - Loebinger, Michael
AU  - Dimakou, Katerina
AU  - Clifton, Ian
AU  - van der Eerden, Menno
AU  - Rohde, Gernot
AU  - Murris-Espin, Marlene
AU  - Masefield, Sarah
AU  - Gerada, Eleanor
AU  - Shteinberg, Michal
AU  - Ringshausen, Felix
AU  - Haworth, Charles
AU  - Boersma, Wim
AU  - Rademacher, Jessica
AU  - Hill, Adam T.
AU  - Aksamit, Timothy
AU  - O'Donnell, Anne
AU  - Morgan, Lucy
AU  - Milenkovic, Branislava
AU  - Tramma, Leandro
AU  - Neves, Joao
AU  - Menendez, Rosario
AU  - Paggiaro, Perluigi
AU  - Botnaru, Victor
AU  - Skrgat, Sabina
AU  - Wilson, Robert
AU  - Goeminne, Pieter
AU  - De Soyza, Anthony
AU  - Welte, Tobias
AU  - Torres, Antoni
AU  - Elborn, J. Stuart
AU  - Blasi, Francesco
ED  - ,
TI  - The EMBARC European Bronchiectasis Registry: protocol for an international observational study
AID  - 10.1183/23120541.00081-2015
DP  - 2016 Jan 01
TA  - ERJ Open Research
PG  - 00081-2015
VI  - 2
IP  - 1
4099  - http://openres.ersjournals.com/content/2/1/00081-2015.short
4100  - http://openres.ersjournals.com/content/2/1/00081-2015.full
SO  - erjor2016 Jan 01; 2
AB  - 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.The European Bronchiectasis Registry will recruit 10 000 patients over 5 years http://ow.ly/Ul7Pd