Summer School to empower professionals to design and manage a rare disease registry

The Summer School on Rare Diseases and Orphan Drugs registries aims to promote the establishment of FAIR Rare Disease Registries

June 6, 2017

Registries represent essential tools for Rare Diseases to increase timely and accurate diagnosis, improve patients management, tailor treatments, facilitate clinical trials, support healthcare planning and speed up research, reasons for which their implementation have become a common objective to be achieved by the European Reference Networks.

The "5th International Summer School on Rare Diseases and Orphan Drug Registries", 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, aims to promote the establishment of Findable, Accessible, Interoperable, Reusable (FAIR) Rare Disease (RD) registries in compliance with IRDiRC and EU Recommendations, consisting of two parts:

  • The first part of the School (September, 18-20) will enable the participants to establish a registry on rare diseases by providing 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 show practically how a rare disease registry can be a FAIR Resource.  

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)].

Registration is open until 30 June 2017! For more information and inscription go ISS website

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