EMBARC
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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.
The EMBARC registry has enrolled more than 20,000 patients over the course of the IABC study from 31 countries, greatly exceeding the 10,000 patient target originally set. The results of the study have resulted in high impact publications, most recently with the report of 16,963 patients data in the Lancet Respiratory Medicine providing the most comprehensive description of disease burden to date. The registry has become a platform around which a large volume of bronchiectasis research in Europe is built. A biobank linked to the registry has been established with external funding from the European Respiratory Society (NCT03791086) and is ongoing supporting translational research into bronchiectasis in multiple countries by providing access to biosamples linked to high quality clinical data. The network established by EMBARC is being used by pharmaceutical companies to support clinical trials, and the first clinical trials delivered directly by the EMBARC consortium have been initiated (ISRCTN70034823).
Data from the registry continues to be used to produce peer reviewed publications and a comprehensive publication plan for the next several years is in place to ensure ongoing outputs from the registry and associated projects. Funding to sustain the registry has been obtained from the European Respiratory Society and is in place until 2025 with the expectation that this will be renewed for a further 3 years in 2025 (https://erj.ersjournals.com/content/61/6/2300769)
Thus the iABC project has created a world leading registry which is sustainable and which is credited with having a major impact on the field of bronchiectasis and will continue to do so for many years to come.
