Courses

Summer School Edition 2019

The International Summer School on Rare Disease Registries and FAIRification of Data, September 23-27, 2019, is a part of a series of training activities proposed by the European Joint Programme on Rare Diseases (EJP RD).In particular this Course is a part of WP14, which aims to organize residential training courses in different Countries on Data Management and Quality.

The Course is made up of 5 days of residential training organized by the National Centre for Rare Diseases – Istituto Superiore di Sanità (ISS), Rome Italy- in close collaboration with, mainly, EJP RD task partners

This course is composed of two training modules: the first module “Rare Disease Registries” starts on September 23 till September 25, 2019, the second module “FAIRification of data”, starts on September 26 till September 27, 2019

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

This course foresees three fellowships for participants living in an EU13 Country and three fellowships for selected rare disease patient representatives.

For more information see the following LINK


Summer School Edition 2018

The “6th International Summer School on Rare Disease and Orphan Drug Registries”, September 10-14, 2018, is organized by the National Centre for Rare Diseases – Istituto Superiore di Sanità, Rome Italy – in collaboration with RD-Connect, ELIXIR-IT, ELIXIR-NL, EURORDIS, Orphanet, EuRRECa, European Reference Networks, EPIRARE and ICORD

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.

For more information see the following LINK


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.