Date: 10 - 14 September 2018

Timezone: Amsterdam

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The "6th International Summer School on Rare Disease and Orphan Drug Registries" is organized by the National Centre for Rare Diseases – Istituto Superiore di Sanità in collaboration with RD-Connect, ELIXIR-IT, ELIXIR-NL, EURORDIS, Orphanet, EuRRECa, European Reference Networks, EPIRARE and ICORD.
Registries are key resources in order to increase timely and accurate diagnosis, improve patients management, tailor treatments, facilitate clinical trials, support healthcare planning and speed up research.
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.
It intends i) to promote the establishment of Findable, Accessible, Interoperable, Reusable (FAIR) registries in compliance with IRDiRC and EU Recommendations and ii) to support cooperation among different registry stakeholders and coordination with registries that are developed within European Reference Networks and National Plans in the EU.

Contact: rareregistries-school@iss.it

Keywords: Registry, rare disease, Findable, Accessible, Interoperable, Reusable, FAIR

Venue: Istituto Superiore di Sanità, Via Giano della Bella, 34

City: Roma

Region: Città Metropolitana di Roma

Country: Italy

Organizer: D. Taruscio, M. Roos, C. Carta

Host institutions: Istituto Superiore di Sanità

Eligibility:

  • Registration of interest

Target audience: database managers, registry curators, health professionals, researchers, medical specialists

Capacity: 27

Event types:

  • Workshops and courses

Scientific topics: Rare diseases


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