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  • International Summer School on Rare Disease Registries and FAIRification of Data

    27 September - 1 October 2021

    International Summer School on Rare Disease Registries and FAIRification of Data https://tess.elixir-europe.org/events/international-summer-school-on-rare-disease-registries-and-fairification-of-data-3f5621f8-73b6-4de3-a069-a30b68e0ca3f The International Summer School on Rare Disease Registries and FAIRification of Data is a part of a series of training activities proposed by the European Joint Programme on Rare Diseases (EJP-RD). EJP-RD is a European Commission funded project with the goal “to create a comprehensive, sustainable ecosystem allowing a virtuous circle between research, care and medical innovation”. For more information about the EJP-RD, see https://www.ejprarediseases.org/ This course is composed of two training modules: – During the first three days module (27-29 September 2021), participants will learn (a) what resources are needed for the establishment/maintenance of a high-quality registry (b) the features of successful strategies to ensure (i) long-time sustainability of the registry, (ii) quality, (iii) legal and ethical issues in compliance with the EU (European Union) General Data Protection Regulation – During the second two days module “FAIRification of data”, (September 30 -October 1, 2021) participants will deepen their knowledge on the single steps of the FAIRification of data and will discover the potential of FAIR registries. In this part a time slot will be allocated to discuss FAIR data management and FAIR project planning. 2021-09-27 14:00:00 UTC 2021-10-01 17:10:00 UTC European Joint Programme on Rare Diseases (EJP-RD), Istituto Superiore di Sanità of Italy Istituto Superiore di Sanità claudio.carta@iss.it [] Cliniciansmedical specialistsregistry curatorsdatabase managershealthcare professionalsrare disease patients representatives 30 workshops_and_courses first_come_first_servedregistration_of_interest Rare DiseasesRegistryethical issues

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