23-27 September 2019 | International Summer School on Rare Disease Registries and FAIRification of Data

Event name: International Summer School on Rare Disease Registries and FAIRification of Data proposed by the the European Joint Programme on Rare Diseases (EJP RD)

Date: 23-27 September 2019

Venue: Aula Rossi, Istituto Superiore di Sanità, Via Giano della Bella, 34 – Rome, Italy

5 days of residential training organized by Istituto Superiore di Sanità (ISS) in close collaboration with, mainly, EJP RD task partners [LUMC & UoG (Endo-ERN), IOR (Bond-ERN), HSK (Metab-ERN), EURORDIS, ISCIII, LUMC, INSERM (RaDiCo), UMCG, DTL-Projects (EIXIR-NL), CNR (ELIXIR -IT), AMC].

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.More information about the learning method, participant and registration can be found on the EJP RD’s website here.