Scope: The activities to be carried out concern the development of 3-4 new registries on rare diseases based on existing registries in Member States, while fully respecting data protection. These registries should constitute key instruments to increase knowledge on rare diseases and develop clinical research. Collaborative efforts to establish data collection and maintain them will be considered, provided that these resources are open and accessible. Registries should be built with the support and according to the standards set up by the European Platform on rare diseases registration and provide all necessary data to the Platform (taking the relevant data protection rules into account).
Entidad Financiadora: CHAFEA