Patient-based Registry


On 29 January 2024, EURAS partners from Work Package 2, who are responsible for clinical activities, met with representatives from ERN-ITHACA (European Reference Network for Rare Malformation Syndromes, Intellectual and Other Neurodevelopmental Disorders). The ERN-ITHACA coordinator and the clinical project manager discussed possible collaborations on patient registries to ensure compatibility with planned and existing European patient registries.