Creating Child-BEAR-Net’s international paediatric bronchiectasis registry: an ERS CRC initiative

<bold>Introduction:</bold> Multi-country disease registries are important for providing real-world data, as shown by the EMBARC registry for the European adult population with bronchiectasis (BE). Lacking comparable paediatric data, an objective of Child-BEAR-Net was to create an international paediatric BE registry. However, the governance and ethics approvals needed for international registries are cumbersome. Here we describe how our registry was created. <bold>Methods:</bold> Before creating Child-BEAR-Net’s BE registry, we surveyed models used by other ERS CRCs and registries. We then formed a registry group that included the European Lung Foundation and patient advisory group representatives, and determined a common dataset where data can be easily combined using REDCap. <bold>Results:</bold> Major challenges included the ethics and governance structures of each country, lack of funding for local sites and being fully dependent on goodwill. Nevertheless, Child-BEAR-Net successfully created an international paediatric registry using a hybrid model where some countries entered data into a centralised database whilst others entered their data into their country’s database which allowed deidentified data to be shared later. We currently have data from >200 children and adolescents across 6 countries (Spain, Italy, Greece, Ukraine, Australia, Turkey). By the ERS conference, we anticipate having >400 paediatric patients in the registry as additional countries and their data are added following ethics and governance clearance. <bold>Interpretation:</bold> Creating international registries encounters several hurdles, which can be overcome by developing a hybrid model as we have done.