International Summer School on Rare Disease Registries and FAIRification of data

Important Dates

Deadline for applications: 12th April 2023
Chosen participants will be notified by: 17th April 2023
Course date: 3-4 May 2023

Venue

Aula Bovet, Istituto Superiore di Sanità, Viale Regina Elena, 299- Rome, Italy

Fee

The course and registration are free of charge. The course organizers will not cover expenses incurred by the participants in any case.

Contact

For all kinds of queries, please contact Dr. Claudio Carta at: claudio.carta@iss.it.

Course Description

This course consists of two modules:
- the first module, titled “Rare disease registries” (25-27 Sep), aims to illustrate what resources are needed for the establishment/maintenance of a high-quality registry, and the features of successful strategies to ensure: 1) Long-time sustainability of the registry, 2) Quality, 3) Legal and ethical issues in compliance with the EU General Data Protection Regulation and 4) FAIR principles;
- during the second module “FAIRification of data” (28-29 Sep) participants will work together with FAIR/Data stewards to deepen the FAIRification process.

Target audience

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

Course registration

Registration form is available at this link

For all the information, please visit the Course website: https://www.ejprarediseases.org/event/international-summer-school-on-rare-disease-registries-and-fairification-of-data-2/