6th International Summer School on Rare Disease and Orphan Drug Registries

Data: 10 Settembre 2018 - 14 Settembre 2018

Luogo: Ist. Superiore di Sanità  |  Città: Roma


Dear Colleagues,

we are pleased to inform you that we are organizing the "6th International Summer School on Rare Disease and Orphan Drug Registries" (September 10-14, 2018, Istituto Superiore di Sanità, Rome, Italy).

Registries are key resources to help increasing timely and accurate diagnosis, improving patients management, tailoring treatments, facilitating clinical trials, supporting healthcare planning and speeding up research.

The International Summer school intend: i) to promote the establishment of Findable, Accessible, Interoperable, Reusable (FAIR) registries in compliance with IRDiRC and EU Recommendations and ii) to support cooperation among different registry stakeholders and coordination with registries that are developed within European Reference Networks and National Plans in the EU.

The School will consist of plenary presentations and interactive small-group exercises, according to the Problem-Based Learning methodology.

The first part of the School (September 10-12, 2018) will provide participants with useful tools and methodologies to plan, establish and manage the registry activities.

The second part (September 13-14, 2018) will be a hands-on experience (Bring Your Own Data), where the attendees work with FAIR data experts to make their data FAIR and linked to other data that has been made FAIR before.

The School is open to health professionals, researchers, medical specialists, registry curators, database managers and representatives of patients associations involved in or intend to establish a rare disease registry, including inside  European Reference Networks.

The detailed program and registration information will be available soon.


Warmest regards.

Domenica Taruscio and Collaborators


Domenica Taruscio, MD
Director, National Center for Rare Diseases (www.iss.it/cnmr)

Istituto Superiore di Sanità

Viale Regina Elena, 299 - 00161 Rome - Italy
Tel. + 39 06 4990 4016  


Registration is possible for:

- the first training module (Rare Disease Registries, Sept. 10-12, 2018),

- the second training module (Bring Your Own Data- BYOD, Sept. 13-14, 2018)

- or both (Rare Disease Registries and BYOD, Sept. 10-14, 2018).


The program is available here.


The School is free of charge: there is not registration fee.

Please note that travel and accommodation are not covered by the organizers.


Online registration form is available at https://it.surveymonkey.com/r/6th_Sum_School_including_BYOD until  June 16, 2018.


For further information, please contact us to Questo indirizzo email è protetto dagli spambots. È necessario abilitare JavaScript per vederlo. and visit the website at this link.



Viale Regina Elena, 299, 00161 Roma RM


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Altre date

  • Da 10 Settembre 2018 a 14 Settembre 2018

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