3rd International Summer School on Rare Disease and Orphan Drug Registries and RD-Connect Workshop Data linkage and ontologies

September 21-25, 2015

Rome, Italy

Organized by:

Organized by RD Connect and Centro Nazionale Malattie Rare.


National Centre for Rare Diseases - Istituto Superiore di Sanità

Viale Regina Elena 299, Rome (Italy)

The two events intend to promote the development of rare disease registries complying with the IRDiRC and EU Recommendations and to support cooperation among different registry stakeholders and coordination with registries developed within national plans in the EU in the field of rare diseases:


  • The Summer School on rare disease and orphan drug registries (September 21-23) will train participants on the methodologies and resources available for the establishment of a clinical research registry and on the implementation of successful strategies to ensure long time sustainability of the registry, including data sharing and dissemination activities.


  • The RD-Connect workshop (September 24-25) will allow attendants to learn new concepts and tools for applying ontologies to their data and make them interoperable with other data coming from different sources.


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