Chalmers JD, 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 et al.

Link to publication page: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5005162/pdf/00081-2015.pdf

Journal Ref: ERJ Open Res. 2016 Jan 20;2(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.