Organizer: European Joint Programme on Rare Diseases (EJP-RD), Istituto Superiore di Sanità of Italy

Host institution: Istituto Superiore di Sanità

Start: Monday, 28 September 2020 @ 14:00

End: Friday, 02 October 2020 @ 17:30

Timezone: CET

Contact: claudio.carta@iss.it

Scientific topic: Rare diseases

Operations: Data handling

Target audience:
  • Clinicians
  • medical specialists
  • registry curators
  • database managers
  • healthcare professionals
  • rare disease patients representatives
Description:

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.
This course is composed of two training modules:

  • during the first three days module 28-30 September 2020, 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 General Data Protection Regulation
  • during the second two days module “FAIRification of data”, 1-2 October 2020, 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.
Event type:
  • Workshops and courses

Capacity: 30

Eligibility:
  • First come first served
  • Registration of interest

Keywords: Rare Diseases, data FAIRness, Registry, ethical issues

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-810a68d3-7fff-4daa-86bc-f2e6ea7a4603 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. This course is composed of two training modules: - during the first three days module *28-30 September 2020*, 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 General Data Protection Regulation - during the second two days module “FAIRification of data”, *1-2 October 2020*, 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. 2020-09-28 14:00:00 UTC 2020-10-02 17:30:00 UTC European Joint Programme on Rare Diseases (EJP-RD), Istituto Superiore di Sanità of Italy Rare diseases Istituto Superiore di Sanità claudio.carta@iss.it [] Cliniciansmedical specialistsregistry curatorsdatabase managershealthcare professionals rare disease patients representatives 30 workshops_and_courses first_come_first_servedregistration_of_interest Rare Diseasesdata FAIRnessRegistryethical issues