3rd International Summer School on Rare Disease and Orphan Drug Registries

This is one of two events intended to promote the development of rare disease registries complying with the IRDiRC  and EU Recommendations, and to support cooperation among different registry stakeholders (EPIRARE RD-Connect), and coordination with registries developed within national plans in the EU in the field of rare diseases.

This initiative is endorsed by ICORD.

This year the program of the International Summer School will be focused on the specific aims and needs of registries oriented to clinical research, comprising the study of the natural history of diseases, the assessment of treatment effectiveness and post-marketing surveillance of orphan drugs.

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 School will consist of frontal presentations followed by interactive small-group exercises on relevant registry cases.

The two events are open to health professionals, researchers, medical specialists, medical students and representatives of patient associations, who are involved or intend to establish a rare disease patient registry. A selection process will apply based on the participant’s background and role with reference to registry activities.

Fees and costs: Registration is free of charge. The School does not cover any travel, subsistence and other costs incurred by the participants to attend the School.

Registration deadline – 20th July

Further details available here