RT Journal Article
SR Electronic
T1 The EMBARC European Bronchiectasis Registry: protocol for an international observational study
JF ERJ Open Research
JO erjor
FD European Respiratory Society
SP 00081-2015
DO 10.1183/23120541.00081-2015
VO 2
IS 1
A1 Chalmers, James D.
A1 Aliberti, Stefano
A1 Polverino, Eva
A1 Vendrell, Montserrat
A1 Crichton, Megan
A1 Loebinger, Michael
A1 Dimakou, Katerina
A1 Clifton, Ian
A1 van der Eerden, Menno
A1 Rohde, Gernot
A1 Murris-Espin, Marlene
A1 Masefield, Sarah
A1 Gerada, Eleanor
A1 Shteinberg, Michal
A1 Ringshausen, Felix
A1 Haworth, Charles
A1 Boersma, Wim
A1 Rademacher, Jessica
A1 Hill, Adam T.
A1 Aksamit, Timothy
A1 O'Donnell, Anne
A1 Morgan, Lucy
A1 Milenkovic, Branislava
A1 Tramma, Leandro
A1 Neves, Joao
A1 Menendez, Rosario
A1 Paggiaro, Perluigi
A1 Botnaru, Victor
A1 Skrgat, Sabina
A1 Wilson, Robert
A1 Goeminne, Pieter
A1 De Soyza, Anthony
A1 Welte, Tobias
A1 Torres, Antoni
A1 Elborn, J. Stuart
A1 Blasi, Francesco
A1 ,
YR 2016
UL http://openres.ersjournals.com/content/2/1/00081-2015.abstract
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