6th International Summer School on Rare Disease and Orphan Drug Registries
Organizer: D. Taruscio, M. Roos, C. Carta
Host institution: Istituto Superiore di Sanità
Start: Monday, 10 September 2018 @ 08:00
End: Friday, 14 September 2018 @ 17:30
Venue: Istituto Superiore di Sanità, Via Giano della Bella, 34
County: Città Metropolitana di Roma
Scientific topic: Rare diseasesTarget audience:
- database managers
- registry curators
- health professionals
- medical specialists
The "6th International Summer School on Rare Disease and Orphan Drug Registries" is organized by the National Centre for Rare Diseases – Istituto Superiore di Sanità in collaboration with RD-Connect, ELIXIR-IT, ELIXIR-NL, EURORDIS, Orphanet, EuRRECa, European Reference Networks, EPIRARE and ICORD.
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 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.
It intends 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.
- Workshops and courses
- Registration of interest
Keywords: Registry, rare disease, Findable, Accessible, Interoperable, Reusable, FAIR