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 Diseases and Orphan Drug Registries” aims to promote the establishment of Findable, Accessible, Interoperable, Reusable (FAIR) Rare Disease (RD) registries in compliance with IRDiRC and EU Recommendations. The Summer School is organized by the National Centre for Rare Diseases (ISS) in collaboration with Services and Centre for International Affairs (ISS), RD-Connect, Elixir, RD-Action, EURORDIS and endorsed by ICORD.
The Summer School will consist of plenary presentations and interactive small-group exercises, according to the Problem-Based Learning methodology. The first part of the School (September, 18-20) 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 second part (September 21-22) 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.
PARTICIPANTS and REGISTRATION
The Summer School is open to health professionals, researchers, medical specialists, registry curators, database managers and representatives of patients associations who are involved in or intend to establish a rare disease registry, mainly inside a European Reference Network [priority will be given to Registry Curators and IT support staff, ePAG members (or a patients/patient representatives linked with ePAGs)].
The Summer School will accept max 24-27 participants. A selection process will be applied based on the participant’s background, role with reference to registry activities, and involvement in ERNs.