Bronchiectasis is an orphan disease, with few evidence based treatments and a lack of data regarding epidemiology, co-morbidities, pathophysiology, severity and prognosis. There have been few longitudinal or cross-sectional studies in bronchiectasis. To give truly meaningful and generalizable results, a longitudinal observational study of bronchiectasis would require to enrol several thousand patients, more than any one centre can enrol. EMBARC will create an open, pan-European registry of patients with non-CF bronchiectasis.
A collaborative, pan-European database would have several important capabilities, including but not limited to:
- To analyse and assess differences in non_CF bronchiectasis practice across europe and identify areas for improvement or further study
- To analyse factors needing large longitudinal datasets e.g predictors of survival,which cannot be accurately studied from single centre studies
- To allow analyses that cannot be achieved from single centre studies alone, such as identifying the prognosis and features associated with less common forms of bronchiectasis e.g inflammatory bowel disease associated, connective tissue disease, PCD etc.
- Perhaps most importantly, to foster multicentre collaboration in non-CF bronchiectasis across Europe and therefore potentially expand the groups activities in time to include recruitment into clinical trials, translational and mechanistic studies.