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5th International Summer School on Rare Disease and Orphan Drug Registries, September 18-22, 2017

Registries represent key resources for Rare Disease to increase timely and accurate diagnosis, improve patients management, tailor treatments, facilitate clinical trials, support healthcare planning and speed up research. The "5th International Summer School on Rare Disease and Orphan Drug Registries" and "Bring Your Own Data, BYOD, to link rare disease registries" intend to promote the establishment of Findable, Accessible, Interoperable, Reusable (FAIR) Rare Disease (RD) registries in compliance with IRDiRC and EU Recommendations. Both events are organized by the National Centre for Rare Diseases, Istituto Superiore di Sanità (ISS) in collaboration with Office for External Relations and Centre for International Affairs, (ISS), RD-Connect, ELIXIR, RD-Action, EURORDIS. EpiRare, European Reference Networks (ERNs), and ICORD.

The Summer School (September 18-20, 2017) will consist of plenary presentations and interactive small-group exercises, according to the Problem-Based Learning methodology.
The course will provide participants with useful tools and methodologies for establish a registry, the quality of the data collected and how a registry is turned into a FAIR resource.

The BYOD (September 21-22, 2017) will be a hands-on experience (bring your own data), where the attendees work with FAIR data experts to make their data FAIR and linkable to other data that has been made FAIR before.

Both events are open to health professionals, researchers, medical specialists, registry curators, database managers and representatives of patients associations who are involved in or intend to establish a rare disease registry, mainly inside a European Reference Network [priority will be given to Registry Curators and IT support staff, ePAG members (or a patients/patient representatives linked with ePAGs)].
Both events will accept max 27 participants.
A selection process will be applied based on the participant’s background, role with reference to registry activities, and involvment in ERNs.

Online registration registration it can be carried out for either one or both events by filling the on-line form at the following link:

Download the programmes below.

Registration is free of charge. ISS does not cover any travel, subsistence and other costs incurred by the participants to attend the event.

The participants’ performance will be mainly evaluated on the basis of the group work written solutions.

For each event a certificate of attendance will be handed to the participants who attended 100% of the program. No credits of Continuing Education in Medicine will be issued.


Aula Marotta, Istituto Superiore di Sanità, Viale Regina Elena, 299 - 00161 Rome, Italy.


Pubblicato il 24-11-2016 in In rilievo , aggiornato al 06-10-2017


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