EMBARC
The European Bronchiectasis Registry
Patient Resource
EMBARC (the European Multicentre Bronchiectasis Audit and Research Collaboration) was established in 2012 to encourage and improve how researchers across Europe work together to improve the healthcare of patients with bronchiectasis.
The aims of the EMBARC group are to help research and improve the quality of care across healthcare systems by developing a European bronchiectasis registry. The registry will build a network of researchers and clinical experts in bronchiectasis to improve future research and clinical priorities. The EMBARC group will also work to attract new researchers and clinicians to the field of bronchiectasis and assist funding applications for bronchiectasis research across Europe.
While this website is currently aimed at clinicians and researchers we are receiving interest from an increasing number of bronchiectasis patients wanting to be a part of the registry but are not able to join in their area.
EMBARC are currently working with the European Lung Foundation (ELF) on creating a registry solely for patient opinion where you will have the opportunity to complete a series of questionnaires or surveys to tell us about your quality of life.
If you have come to the website for information about bronchiectasis and living with the condition or how to improve self-management of the condition, please visit http://www.europeanlung.org/lung-disease-and-information/lung-diseases/bronchiectasis for the most up to date patient information. ELF have also developed a patient friendly website displaying lots of useful information including videos, much of which has been translated into mulitple languages, this can be found at https://www.europeanlunginfo.org/bronchiectasis with the website itself having now been transated into French and Dutch.
Following the release of the European Respiratory Society bronchiectasis guidelines in September 2017, ELF have worked with the patient advisory group in creating lay terms of the guidelines for the benefit of the patient. The document ‘Managing adult bronchiectasis – understanding the professional guidelines’ has also been translated into multiple languages. To access the patient guidelines, please visit http://www.europeanlung.org/en/lung-disease-and-information/factsheets/english where further translations can also be found by clicking on the corresponding flag.
The below article describes the experience of EMBARC and the European Lung Foundation in establishing a patient advisory group and then engaging this group in European guidelines, an international registry and a series of research studies.