Read the Report from RD-Connect of the Rare Diseases Registries Summer School, which took place in Rome in September.
VASCERN was represented by our ePAG Representative, Christina Grabowski (Morbus Osler, Germany).
As indicated by RD-Action: “The event promoted the establishment of Findable, Accessible, Interoperable, and Reusable (FAIR) rare disease registries in compliance with the International Rare Diseases Research Consortium (IRDiRC) and EU Recommendations. At the 5th International Summer School, the attendees learned what resources are needed to establish a rare disease registry and got to know strategies to ensure (i) long term sustainability of a registry, (ii) data quality, (iii) the application of FAIR data principles to extend the usability of registry data.”
All presentations are available for download here