ARCHIVES OF PUBLIC HEALTH

Full list of author information is available at the end of the articleBackground The European Union (EU) acknowledges the rele-vance of registries as key instruments for developing rare disease (RD) clinical research, improving patient care and health service (HS) planning [1,2]. The European Commission has funded the EPIRARE and other projects on EU patient registration, and stated that its strategic objective is the creation of the European Platform for RD patient registration (RDR), providing common services and tools for the existing (and future) rare disease registries in the EU [3]. The EPIRARE project (“Building Consensus and Synergies for the EU Registration of Rare Disease Patients”, www.epirare.eu), studied a model for this platform [4] and concluded that it should have an important role in improving standardization and data comparability and, where useful, supporting the set up of new regis-tries. Actual data collection should be limited to diseases for which disease-specific registries are not sustainable or for which there is no specific research * Correspondence