- About EMBARC
- Patient Resource
- Registry Documents
- EMBARC Registry
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:
Participation is open to anyone caring for patients with bronchiectasis. The study is now open with a short term target of to enrol 10000 patients over the course of 5 years. Baseline data will be recorded using a baseline data form incorporating all relevant bronchiectasis variables. Study participants will then be asked to enter follow-up data for patients on an annual basis to give longitudinal data on changes in medication, exacerbation frequency, hospital admissions and survival data.
The dataset will be sufficiently simple that any specialist bronchiectasis clinic will be able to provide the data. Nevertheless, the data are sufficiently robust that they will provide a comprehensive overview of all aspects of bronchiectasis care in Europe. The network is intended to serve as a platform to engage researchers and facilitate collaborations around Europe.
Join the network now to view the case report form and further information about taking part in the network activities.