The aim of the ERN eUROGEN Registry is to build a patient-centred and interoperable registry hub for rare urorectogenital diseases and conditions. This registry will assist the EC in monitoring the quality of care for rare disease patients across the EU while providing the ERN eUROGEN Healthcare Providers (HCPs) with a necessary tool to benchmark their performance.
Loes van der Zanden, ERN eUROGEN Registry Coordinator, chaired a virtual kick-off meeting on 28 July 2020, and the minutes can be found on the ERN Collaborative Platform (ECP). This successful meeting underlined the commitment of all participants. We will keep you updated with further progress.