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

Host institution: Istituto Superiore di Sanità

Start: Monday, 23 September 2019 @ 09:00

End: Friday, 27 September 2019 @ 18:00

Timezone: CET

Contact: claudio.carta@iss.it

Venue: Via Giano della Bella, 34

City: Roma

County: Città Metropolitana di Roma

Country: Italy

Scientific topic: Rare diseases

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:

The first module “Rare Disease Registries” starts on September 23 till September 25, 2019, during these three days 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 and (iv) FAIR principles
The second module “FAIRification of data”, starts on September 26 till September 27, 2019 during these two days participants, working with IT-trainers, will make use case data FAIR. The potential of a FAIR registry, as the basis for cross resource questions, will be demonstrated by executing a query across the use cases that become FAIR. In this part a time slot will be allocated to discuss FAIR data management and FAIR project planning.

Event type:
  • Workshops and courses
Eligibility:
  • First come first served
  • Registration of interest

Keywords: Rare Diseases, 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 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: The first module “Rare Disease Registries” starts on September 23 till September 25, 2019, during these three days 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 and (iv) FAIR principles The second module “FAIRification of data”, starts on September 26 till September 27, 2019 during these two days participants, working with IT-trainers, will make use case data FAIR. The potential of a FAIR registry, as the basis for cross resource questions, will be demonstrated by executing a query across the use cases that become FAIR. In this part a time slot will be allocated to discuss FAIR data management and FAIR project planning. 2019-09-23 09:00:00 UTC 2019-09-27 18:00:00 UTC European Joint Programme on Rare Diseases (EJP-RD), Istituto Superiore di Sanità of Italy Via Giano della Bella, 34, Roma, Italy Via Giano della Bella, 34 Roma Città Metropolitana di Roma Italy Rare diseases Istituto Superiore di Sanità claudio.carta@iss.it [] Cliniciansmedical specialistsregistry curatorsdatabase managershealthcare professionals rare disease patients representatives workshops_and_courses first_come_first_servedregistration_of_interest Rare DiseasesRegistryethical issues