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5th International Summer School on Rare Diseases and Orphan Drug Registries

The Summer School promoted the establishment of FAIR RDs registries

September 28, 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 (ERNs).

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 was held last 18-22 September in Rome with the aim to promote the establishment of Findable, Accessible, Interoperable, Reusable (FAIR) Rare Disease (RD) registries in compliance with IRDiRC and EU Recommendations

The first part of the School enabled the participants to establish a registry on rare diseases by providing with useful tools and methodologies for establishing a registry, the quality of the data collected and how a registry is turned into a FAIR resource.

The second part showed practically how a rare disease registry can be a FAIR Resource.

The Summer School was attended by 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. Victoria Gutiérrez, ERN-EuroBloodNet IT and Dissemination manager attended in representation of ENERCA and the ERN.

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