Course endorsed by ICORD:

5th International Summer School on Rare Disease and Orphan Drug Registries
September 18-22, 2017
National Centre for Rare Diseases, Istituto Superiore di Sanità, Rome, Italy


Registries represent key resources to increase timely and accurate diagnosis, improve patient management, tailor treatments, facilitate clinical trials, support healthcare planning and speed up research. The International Summer school intend to i) promote the establishment of Findable, Accessible, Interoperable, Reusable (FAIR) registries in compliance with IRDiRC and EU Recommendations and ii) support cooperation among different registry stakeholders and coordination with registries that are developed within European Reference Networks and National Plans in the EU.

The course will consist of plenary presentations and interactive small-group exercises, according to the Problem-Based Learning methodology. The first part of the course (September 18-20) will provide participants with useful tools and methodologies to establish, manage and plan the registry activities. The second part (September 21-22) 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 summer school is 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. In particular, for each ERN we strongly invite, as participants, a registry curator, a data manager and 1 ePAG (or a patient / patient representative linked with ePAG): therefore a trios for each ERN. The course will accept max 24-27 participants.

The program, registration information and selection criteria of participants will be available soon.

For more information and registration see the following link.