Joint Workshop ERICA – c4c "Exploring and enhancing the potential for ERN registries to advance research in rare and paediatric conditions"

The workshop took place in February 2025 with the aim of bringing together representatives of ERN registries, conect4children (c4c) partners, and additional experts, to better understand the current potentiality of the existing 24 ERN’s registries with respect to paediatric research and regulatory purposes. The discussion also focussed on ERNs collaboration and communication in the post-ERICA stage, identifying gaps and areas which would need to be addressed to make these registries more appropriate and powerful for these activities, and to suggest steps or actions which could be taken forward by post c4c projects to maximise the potential.