European Rare Disease Registry Infrastructure (ERDRI) tools Central Metadata Repository The Central Metadata Repository A database containing data elements used by registries for specific entities and their definitions, units, names... The European Directory of Registries The European Directory of Registries A meta-registry that provides an overview of existing registries with rare diseases in Europe. Pseudonymisation toolkit Pseudonymisation toolkit Supports registries at local level by offering a harmonised EU-wide solution to ensure patient pseudonymisation European Standards for RD Data Collection and Exchange Pseudonymisation toolkit Set of Common Data Elements A tool to allow the collection of common data in a uniform format by all adhering registries. European Surveillance Networks Surveillance of Celebral Palsy in Europe Surveillance of Cerebral Palsy in Europe The European Commission, in response to the Council of the European Union's conclusions on reducing the burden of cancer, initiated a ground-breaking project to develop. European surveillance of congenital anomalies European surveillance of congenital anomalies Evidence-based guidelines. European quality assurance scheme for breast cancer services underpinned by accreditation and referring to high quality...
