International Summer School on Rare Disease Registries and FAIRification of Data

28 September – 2 October 2020. Istituto Superiore di Sanità, Rome, Italy (ONLINE)

Due to the force majeure situation, the international travel policies associated with COVID-19 and extraordinary measures to limit the spread of the virus, the Italian health authorities (including the Istituto Superiore di Sanità, ISS), recommend adopting a precaution approach and cancel the planned trips and events. In order to ensure the correct progress of the planned tasks of EJP RD, ISS ensures that the international course “ International Summer School on Rare Disease Registries and FAIRification of Data ”28 September  – 2 October 2020, ISS, Rome will be held ONLINE.

The International Summer School on Rare Disease Registries and FAIRification of Data is a part of a series of training activities proposed by the EJP RD.
The 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 Course is a part of the “Data Management & Quality Training” project, which aims to organize residential training courses in different Countries.
The Course is made up of 5 days of training organized by ISS in close collaboration with EJP RD partners  [LUMC & UoG (Endo-ERN), IOR (Bond-ERN), UUH (Metab-ERN), EURORDIS, ISCIII, LUMC, INSERM (RaDiCo), UMCG, DTL-Projects (EIXIR-NL), CNR (ELIXIR -IT), AMC].
ISS, has gained vast experience by organizing numerous courses focused on rare disease registries with the support of key partners. In particular, since 2013 ISS has organized and hosted the “International Summer School on Rare Disease and Orphan Drug Registries” and since 2014 the “Bring Your Own Data To Link Rare Disease Registries”.

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:

  • 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.

In the first module there will be plenary presentations, interactive and question & answers sessions between speakers and participants.
In the second module, on the last two days of the course, for each step of the FAIRification  process there will be plenary sessions followed by hands-on exercises and a wrap up session.

The training course is open to the international research community, clinicians, medical specialists, registry curators, database managers, healthcare professionals and rare disease patients representatives.
To ensure active participation and exchange with teaching staff and participants, a maximum of 30 attendees will be admitted to each training module.
selection process will be applied based on the participants’ background, role with reference to registry activities, and involvement in ERNs.

Registration was 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

REGISTRATION IS NOW CLOSED (deadline for registration was 19 July 2020).
An e-mail will be sent, by 31 July 2020, to the selected participants for the course.
Respondents who are not contacted by email should consider themselves not selected but will be kept on a waiting list until  7  September 2020.

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

At the end of each training module a learning assessment, based on an online multiple choice questionnaire and an oral test, will take place.

A certificate of attendance will be handed to the participants who attended 100% of the single training module or the entire course program. No credits of Continuing Education in Medicine will be issued.



If you have questions please write to the course organiser Dr. Claudio Carta:

claudio.carta(at)   (in cc laura.cellai(at)

EJP RD Summer School RD Registries & FAIRification