Date: 23 - 27 September 2019

Timezone: Amsterdam

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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.

Contact: claudio.carta@iss.it

Keywords: Rare Diseases, Registry, ethical issues

Venue: Via Giano della Bella, 34

City: Roma

Region: Città Metropolitana di Roma

Country: Italy

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

Host institutions: Istituto Superiore di Sanità

Eligibility:

  • First come first served
  • Registration of interest

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

Event types:

  • Workshops and courses

Scientific topics: Rare diseases


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