- About EMBARC
- Patient Resource
- Registry Documents
- EMBARC Registry
Facilitating Research Into Existing National DataSets (FRIENDS)
Many countries and specialists centres have had established electronic databases or have performed longditudinal observational studies over the past decade. The EMBARC registry is a prospective registry of newly identified patients. The purpose of the FRIENDS project is to identify and characterise historical datasets from around Europe.
Members of the EMBARC group have already demonstrated the effectiveness of this approach, pooling data from 5 large EU datasets with 1310 patients to perform the prospective derivation and validation of a clinical prediction tool for bronchiectasis. Building on this cohort, the FRIENDS project will identify, characterise and pool existing databases from around Europe to provide as clear a picture as possible of the management and outcomes of patients with bronchiectasis over the past decade.
Publications using FRIENDS
Even patients with mild bronchiectasis need testing for the underlying cause- Sara Lonni and colleagues demonstrate that some aetiologies, like COPD, are more common in severe disease, but potentially treatable aetiologies are present across the whole spectrum