Registries represent key resources for Rare Disease to increase timely and accurate diagnosis, improve patients management, tailor treatments, facilitate clinical trials, support healthcare planning and speed up research. The “5th International Summer School on Rare Disease and Orphan Drug Registries” and “Bring Your Own Data, BYOD, to link rare disease registries” intend to promote the establishment of Findable, Accessible, Interoperable, Reusable (FAIR) Rare Disease (RD) registries in compliance with IRDiRC and EU Recommendations. Both events are organized by the National Centre for Rare Diseases, Istituto Superiore di Sanità (ISS) in collaboration with Office for External Relations and Centre for International Affairs, (ISS), RD-Connect, ELIXIR, RD-Action, EURORDIS. EpiRare, European Reference Networks (ERNs), and ICORD.
The Summer School (September 18-20, 2017) will consist of plenary presentations and interactive small-group exercises, according to the Problem-Based Learning methodology.
The course will provide participants with useful tools and methodologies for establish a registry, the quality of the data collected and how a registry is turned into a FAIR resource.
The BYOD (September 21-22, 2017) will be a hands-on experience (bring your own data), where the attendees work with FAIR data experts to make their data FAIR and linkable to other data that has been made FAIR before.