The EMBARC registry

Introduction

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.

Objectives of the study

• To develop a pan-European multicentre bronchiectasis database incorporating baseline data collection with annual follow-up data.
• To describe the demographics, co-morbidities, aetiology, medication usage, resource consumption, microbiology, severity and prognosis of bronchiectasis across Europe. In summary, a comprehensive description of characteristics and burden of this disease across the continent.
• The foster a collaborative pan-European network that will drive new research and interest in bronchiectasis

Study design

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.