Workshops and courses

ELIXIR node event International Summer School on Rare Disease Registries and FAIRification of Data

View event

Date: 28 September - 2 October 2020

Timezone: Amsterdam

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.

Contact: claudio.carta@iss.it

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

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

Capacity: 30

Event types:

  • Workshops and courses

Scientific topics: Rare diseases

Operations: Data handling

Activity log