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 (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.
This edition of the training course organized by the Istituto Superiore di Sanità (ISS) in close collaboration with EJP-RD partners will be held ONLINE, due to the force majeure situation associated with the COVID-19 pandemic.
Course director: Dr. Domenica Taruscio, Head of the National Centre for Rare Diseases (CNMR), ISS, Rome
Course coordinator: Dr. Claudio Carta (CNMR), ISS, Rome
This course is composed of two training modules:
• 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.
• Second two days module (1 – 2 October 2020) “FAIRification of data”, 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.
Registration is available for:
• the first training module: “Rare Disease Registries”, 28 – 30 September 2020
• the second training module: “FAIRification of Data”, 1 – 2 October 2020 • the entire course: “Rare Disease Registries” and “FAIRification of data”, 28 September – 2 October 2020.
The online registration form is available at this link: https://sondage.inserm.fr/index.php/257338/lang-en
For further information, please see the following LINK
The draft of the programme and logistics are available at this LINK
If you have any question, please contact the course organizer: firstname.lastname@example.org and CC: email@example.com