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 Istituto Superiore di Sanità (ISS) in close collaboration with EJP-RD partners will be held ONLINE, due to the force majuere 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 possible 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
Fees and Costs
The course and registration are free of charge.
The course organisers will not cover expenses incurred by the participants in any case.
Online registration is available at https://sondage.inserm.fr/index.php/257338/lang-en
until July 19, 2020.
For the programme and other information see https://www.ejprarediseases.org/wp-content/uploads/2020/06/EJP-RD_Summer-School-RD-RegistriesFAIRification.pdf
Important dates, deadlines, and further information, please visit the website at the following LINK https://www.ejprarediseases.org/index.php/international-summer-school-on-rare-disease-registries-and-fairification-of-data-2/
If you have any question please contact the course organizer: claudio.carta@iss.it (with laura.cellai@iss in Cc).
Tematica
Malattie Rare