International Summer School on Rare Disease Registries and FAIRification of Data

23 Settembre 2019 - 27 Settembre 2019
Istituto Superiore di Sanità - Viale Regina Elena, 299, 00161 Roma RM



The Course is a part of a series of training activities  proposed by the European Joint Programme on Rare Diseases (EJP-RD). EJP-RD is a European Commission funded project (grant agreement No 825575, 2019 – 2023) with the goal “to create a comprehensive, sustainable ecosystem allowing a virtuous circle between research, care and medical innovation”.

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 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

The training course is open to the international research community, clinicians, medical specialists, registry curators, database managers, healthcare professionals and rare disease patients representatives

Registration is possible for:

∙ the first training module (“Rare Disease Registries”, September 23-25, 2019)

∙ the second training module (“FAIRification of Data”, September 26-27, 2019)

∙ the entire course (“Rare Disease Registries” and “FAIRification of data”, September 23-27, 2019).

 Online registration form is available at this link until June 20, 2019:     


The draft of the programme, Logistics Important dates and further information, please visit the website at the following LINKs







Altre date

  • Da 23 Settembre 2019 a 27 Settembre 2019

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