Overview
The first European Reference Networks will be operational by late 2016/early 2017. Although the primary purpose of an ERN is to facilitate access to highly specialised healthcare in domains requiring a particular concentration of expertise, research will be a cornerstone of each network – ERNs and their constituent Healthcare Provider members need to demonstrate research excellence. The RD-Connect platform has been designed to support the linking of RD patient data from databases, registries, biobanks and bioinformatics, to support research and increase the potential of precious RD data. The tutorial will demonstrate how the RD-Connect platform could support ERNs in conducting their research activities. It will also address the most relevant ethical, legal and social issues related to sharing patient data in this way.
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