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

Periodo: 10/09/2018 - 14/09/2018

Luogo: Roma

Organizzatore: Istituto Superiore di Sanità

Dear Colleagues, 

I am pleased to inform you that we open now the registration to the 6th International Summer School Rare Disease & Orphan Drug Registries, including BYOD to Link Rare Disease Registries (September 10-14, 2018, Istituto Superiore di Sanità, Rome, Italy).

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. 

The International Summer school intends: i) to promote the establishment of Findable, Accessible, Interoperable, Reusable (FAIR) registries in compliance with IRDiRC and EU Recommendations, with particular attention to governance, quality, sustainability and legal issues; ii) to support cooperation among different registry stakeholders and coordination with registries that are developed within European Reference Networks (ERNs) 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 (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 ERN registries.

Registration is possible for:

- the first part (“Rare Disease Registries”, September 10-12, 2018),

- the second part (“Bring Your Own Data - BYOD”, September 13-14, 2018)

- or both (“Rare Disease Registries” and BYOD”, September 10-14, 2018).

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 May 31, 2018.

The program will be circulated as soon as available.

For further information, please contact us to rareregistries-school@iss.it and visit the website at this link.

Warmest regards

Domenica Taruscio and Colleagues

Domenica Taruscio


Director of the National Centre for Rare Diseases Istituto Superiore di Sanità


Viale Regina Elena, 299 - 00161 Rome (Italy)


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