International Summer School on Rare Disease Registries and FAIRification of Data

  • 27 September 2021 - 14:00

International Summer School on Rare Disease Registries and FAIRification of Data
September 27 – October 1, 2021
Istituto Superiore di Sanità, Rome, Italy

Registration OPEN for Reserve List until September 12


Due to the force majeure situation and 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”, September 27 – October 1, 2021, 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 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”. For more information about the EJP-RD, see

This Course is a part of the WP14 on “Data Management & Quality Training”, which aims to organize residential training courses in different Countries. WP and Task Leader: Dr. Claudio Carta, ISS.

Course Director: Dr. Domenica Taruscio, ISS.

The Course is made up of 5 days of training organized by Istituto Superiore di Sanità (ISS) in close collaboration with, mainly, EJP-RD task partners [LUMC & UoG (Endo-ERN), IOR (Bond-ERN), UUH (Metab-ERN), EURORDIS, ISCIII, LUMC, INSERM (RaDiCo), UMCG, DTL-Projects (ELIXIR-NL), CNR (ELIXIR -IT), AMC]

The Course is endorsed by ICORD

ISS, has gained vast experience by organizing numerous courses focused on rare disease registries with the support of key partners. 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”.

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.

In the first and second module there will be interactive plenary presentations and question & answer sessions between speakers and participantsMoreover in the second module there will be hands-on exercises and a wrap up session.  

You will find the programme here.

An email will be sent by 30 July 2021 to the selected participants.
Respondents should consider themselves on a reserve list until 12 September 2021
REGISTRATION IS NOW OPEN here for a Reserve List until 12 September 2021.
After this date (September 12 2021) the selection process will close and we hope that the non-selected participants will apply for the next edition of the training course.

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. A selection process will be applied based on the participants’ background, role with reference to registry activities, and involvement in ERNs.

Registration is possible for:
– the first training module: “Rare Disease Registries”, September 27-29, 2021
– the second training module: “FAIRification of Data”, September 30 October 1, 2021
– the entire course: “Rare Disease Registries” and “FAIRification of data”, September 27 – October 1, 2021.

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 will take place.  

At the end of the course 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 coordinator Dr. Claudio Carta: (in Cc


  • Start Date:27 September 2021
  • Start Time:14:00
  • End Date:1 October 2021
  • End Time:17:10
  • Location:ONLINE