Children's Bronchiectasis Education, Advocacy and Research Network
About
Learning. Sharing. Listening. Researching. Improving.
We are an international collaboration with a goal to improve the care and clinical outcomes of children with bronchiectasis, formed under the auspices of the European Respiratory Society in 2021.
A European Respiratory Society Clinical Research Collaboration
What is bronchiectasis?
Credit: Professor Oleksandr Mazulov
Objectives
Over the next three years, our specific objectives are to:
Build a collaborative international network of patients/parents of children with bronchiectasis, clinicians, researchers and scientists with expertise in paediatric bronchiectasis to lead clinically important research priorities in Europe and beyond,
Create standardised multi-national bronchiectasis registries relevant in both high and low or medium income countries,
Develop a ‘Quality Standards’ document based on the ERS guideline,
Establish a standardised definition of respiratory exacerbations for clinical research, and
Establish a consensus of core outcomes/endpoints for the evaluation of interventions relevant to children/patients with bronchiectasis and their parents and considered important by clinicians.
Listening and Doing
The ERS paediatric bronchiectasis taskforce developed the first international clinical practice guideline for the management of children and adolescents with bronchiectasis. This guideline was in partnership with the European Lung Foundation and parents of children with bronchiectasis.
Researching and Improving
Early diagnosis and appropriate treatment of bronchiectasis are vital for reducing the future burden of paediatric bronchiectasis. The management paradigm includes reversing the disease when possible and halting disease progression.
Learning from patients and parents
Our work includes two global surveys undertaken as part of the scope of work led by the European Respiratory Society Paediatric Bronchiectasis Task Force. These informed the clinical practice guidelines and an international roadmap on clinical and research priorities for children and young people with bronchiectasis.