Registries in Rome

OIFE’s honorary member Taco van Welzenis recently attended the International Summer School on Rare Disease Registries and FAIRification of Data in Rome, Italy from Sep. 23rd – 27th 2019. It was a part of a series of training activities proposed by the European Joint Programme on Rare Diseases (EJP RD). You can download the agenda of the course here.

The Course was made up of 5 days of residential training organized by Istituto Superiore di Sanità (ISS) in close collaboration with other stakeholders.

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 was composed of two training modules:

Module 1:
“Rare Disease Registries” where the participants learned
(a) what resources are needed for the establishment / maintenance of a high quality registry
(b) the features of successful strategies to ensure long-time sustainability of the registry, quality, legal and ethical issues in compliance with the EU General Data Protection Regulation and FAIR principles.

Module 2
“FAIRification of data” enabled the participants to work with IT-trainers learn more about the FAIR principles. The potential of a FAIR registry, as the basis for cross resource questions, were demonstrated by executing a query across the use cases that become FAIR. A time slot was allocated to discuss FAIR data management and FAIR project planning.

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