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Keywords: rare disease 

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Node: Italy 

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  • 6th International Summer School on Rare Disease and Orphan Drug Registries

    10 - 14 September 2018

    Roma, Italy

    6th International Summer School on Rare Disease and Orphan Drug Registries https://tess.elixir-europe.org/events/6th-international-summer-school-on-rare-disease-and-orphan-drug-registries 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. 2018-09-10 08:00:00 UTC 2018-09-14 17:30:00 UTC D. Taruscio, M. Roos, C. Carta Istituto Superiore di Sanità, Via Giano della Bella, 34, Roma, Italy Istituto Superiore di Sanità, Via Giano della Bella, 34 Roma Città Metropolitana di Roma Italy Rare diseases Istituto Superiore di Sanità rareregistries-school@iss.it [] database managersregistry curators health professionalsresearchersmedical specialists 27 workshops_and_courses registration_of_interest Registryrare diseaseFindableAccessibleInteroperableReusableFAIR
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