Dear Colleagues,
Bronchiectasis in children remains an understudied syndrome, with insufficient comprehensive information on its epidemiology, aetiology, comorbidities, pathophysiology, and prognosis. In childhood, bronchiectasis is defined as a clinical syndrome characterized by a chronic wet cough, recurrent respiratory exacerbations, and abnormal bronchial dilatation observed on high-resolution chest computed tomography. Bronchiectasis represents a common outcome of various aetiologies, all characterised by inflammation, impaired mucus clearance, and chronic bacterial infection.
To address the neglected field of bronchiectasis in children, the Clinical Research Collaboration known as the Childrenโs Bronchiectasis Education, Advocacy, and Research Network (Child-BEAR-Net), funded by the European Respiratory Society, has built an international paediatric bronchiectasis registry (Child-BEAR-Net Registry). The aims of the Child-BEAR-Net Registry are:
- Collect longitudinal information on clinical characteristics, epidemiology, aetiology, comorbidities and management
- Conduct annual longitudinal follow-up
- Create a framework for future consensus, interventions, collaborations and research projects both, at both the international level and with the European Bronchiectasis Registry (EMBARC)
We invite all centers within the ERN-Lung network that treat paediatric patients (aged 0 to 17 years) diagnosed with bronchiectasis (excluding cystic fibrosis) to participate in this project.
Your participation in the Child-BEAR-Net registry will contribute to advancing the understanding of bronchiectasis features in children by describing this population and identifying any distinct characteristics between different countries and regions. Additionally, it will provide valuable information on prevalence and incidence, expand the knowledge of its natural history, improve management and treatment strategies, and ultimately enhance the quality of life for paediatric patients with bronchiectasis.
Child-BEAR-Net offers the possibility to establish national registries, with data subsequently transferred to the international registry.
For more information, please contact: childbearnet@qut.edu.au
Sincerely,
Child-BEAR-Net Committee
