Health professionals, researchers, medical specialists, medical students and representatives of patient associations, who are involved or intend to establish a rare disease patient registry are invited to participate in 3rd International Summer School on Rare Disease and Orphan Drug Registries on September 21-23, 2015 and RD-Connect Workshop Data linkage and ontologies on September 24-25, 2015.
The events will take place at the National Centre for Rare Diseases – Istituto Superiore di Sanità in Rome (Italy).
The School 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 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 (www.epirare.eu; http://rd-connect.eu), and coordination with registries developed within national plans in the EU in the field of rare diseases .
Registration is free of charge. You can apply for the school here.