Workpackage 6: Registries

/Workpackage 6: Registries
Workpackage 6: Registries 2018-05-02T12:26:52+00:00

Leader: Prof. Alessandra Renieri (Siena)

The Registry Workpackage will gather existing patient registries on Rare Diseases to consider the best ways of consolidating and accessing this data. We will also think about how data quality in registries can be measured, as well as aim to improve the links between clinical and laboratory patient registries.