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Child-BEAR-net: Children’s Bronchiectasis Education Advocacy and Research Network
CRC Chairs: Anne Chang (Queensland Children’s Hospital and Qld University of Technology, Brisbane, Australia) Ahmad Kantar (Istituti Ospedalieri Bergamaschi, Bergamo, Italy)
The Child BEAR net (Children’s Bronchiectasis Education Advocacy and Research Network) clinical research collaboration (CRC) was launched by the European Respiratory Society (ERS) in 2021. There is a large knowledge gap in the field of paediatric bronchiectasis (BE), a neglected chronic disease. Paediatric bronchiectasis is particularly important as optimal management can reverse clinically compatible, radiographically defined bronchiectasis, thus preventing progression to severe bronchiectasis in adults. This CRC builds upon its ERS Clinical Practice Guideline for managing children/adolescents with BE, completed recently with substantial input from the European Lung Foundation (ELF) . The CRC will create vital infrastructure to progress research and collaboration in paediatric BE and will advance this neglected field, raise awareness, encourage an evidence-based approach and improve the lives of the many children at risk of, or affected by, bronchiectasis.
Specific aims
To build a collaborative international network of consumers, clinicians, clinical researchers and biomedical scientists with expertise in paediatric bronchiectasis to lead clinically important research priorities in Europe and beyond.
To create standardised multi-national bronchiectasis registries relevant in both high and low- or medium-income countries.
To develop a ‘Quality Standards’ document based on the ERS paediatric clinical practice guideline for the management of bronchiectasis in children and adolescents.
To establish a standardised definition of respiratory exacerbations for clinical research.
To establish a consensus of core outcomes/endpoints for the evaluation of interventions relevant to consumers and considered important by clinicians.
Stakeholders
Child-BEAR-Net has an eight-member steering committee, a scientific manager and an additional 15 core members, composed of clinician researchers, experts in translational research, young investigators and patient representatives.
Contact
If you are interested in more information about Child BEAR net or would like to join the network, please contact scientific@ersnet.org.
Follow the progress of Child BEAR net on twitter: @Child_BEAR_Net.
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