The International Summer School on Rare Disease Registries and FAIRification of Data 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 with the goal “to create a comprehensive, sustainable ecosystem allowing a virtuous circle between research, care and medical innovation”. For more information about the EJP-RD, see https://www.ejprarediseases.org/

This course is composed of two training modules:
– During the first three days module (27-29 September 2021), 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 (European Union) General Data Protection Regulation
– During the second two days module “FAIRification of data”, (September 30 -October 1, 2021) 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.