3rd International summer school on rare disease and orphan drug registries

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 Workshop will consist of brief frontal presentations and practical working groups where participants will learn to make their data interoperable with other sources and databases. The working groups will get together registry owners and bio-informatics experts.

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 is carried out by filling the on-line form

The RD-Connect workshop data linkage and ontologies is being held at the Istituto Superiore di Sanità after this event (24-25th September).

Registration can be carried out for either one or both events.