International Summer School on Rare Disease Registries and FAIRification of data

25-29 September 2023, Istituto Superiore di Sanità (ISS), Rome, Italy, viale Regina Elena 299.sThis Course is a part of WP14, which aims to organize residential training courses in different Countries on Data Management and Quality. Task 14.5: “Training on rare disease registries and FAIRification of data at the source”. WP and Task Leader: Dr. Claudio Carta, ISS.

Course Director: Dr. Claudio Carta, ISS. 

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

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. 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 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:

• during the first module “Rare disease registries” (25-27 September) 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 and (iv) FAIR principles
• during the second module “FAIRification of data” (28-29 September) participants, working together with FAIR/Data stewards, will deepen the FAIRification process. The potential of a FAIR registry, as the basis for cross resource questions, will be demonstrated by executing a query across use cases. 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 with interactive question & answer sessions between speakers and participants, hands on and work in small groups.

In the second module there will be interactive plenary session and hands-on experience (Bring Your Own Data, BYOD).

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

This course foresees:

1. Three fellowships for participants living in a EU-13 Country or in Turkey. For more information about eligibility and criteria for selection, contact Claudio Carta at: claudio.carta@iss.it (in Cc laura.cellai@iss.it)
2. Three fellowships for rare disease patient representatives. For more information about eligibility and criteria for selection, contact Roseline Favresse at: roseline.favresse@eurordis.org

For each fellowship a maximum of 420 euro for the round travel and 150 euro/night for hotel accommodation for a maximum of 5 nights are available.

Participants are asked to bring their laptops in order to participate to the hands on and the practical demonstrations.

REGISTRATION IS NOW OPEN HERE until 5 July 2023

The course and registration are free of charge.
The course organizers 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 and a satisfaction survey will be submitted to the participants.

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 programme. No credits for Continuing Education in Medicine will be issued.

The course official language is English.

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

See the programme here.

If you have questions, please write to Dr. Claudio Carta: claudio.carta@iss.it (in Cc laura.cellai@iss.it)