The Irish Rare Kidney Disease (RKD) registry (medical data store) is the core dataset underpinning the
FAIRVASC project, which seeks to link together rare disease registries across Europe. The RKD registry has
established many of the terms used in the harmonised FAIRVASC data dictionary, which the other registries map
to. However, work package 1, which is focused on measuring the data quality metrics across all the registries, has
highlighted some deficiencies in the RKD registry data quality which threaten the utility of the final FAIRVASC
interface. Therefore, the objective of the additional work is to set up and conduct a comprehensive review of
RKD data quality. The metrics by which this can be judged have already been defined so Elizabeth will use these
to review each data item that forms part of the FAIRVASC data dictionary. Once a matrix of data quality issues has
been generated, she will systematically address these in collaboration with the patient facing research nurse team,
project managing these activities and driving them to completion. She will validate the updated dataset
periodically. The associated deliverable will be a final RKD data quality report for FAIRVASC, to be delivered at
the completion of the FAIRVASC project.
