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International Summer School on Rare Disease Registries and FAIRification of Data


Content Provider

Elixir Italy






Start Date

1/01/1970 - 00:33

End Date

2/10/2020 - 17:30


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.

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