FAIRVASC – building registry interoperability to inform clinical care

REGISTRIES

The EUVAS Registries Group (led by Prof. Mark Little, TCD) has identified over 11,000 AAV cases in European national registries and has defined a common data dictionary. The most important national registries include Ireland’s Rare Kidney Disease registry, the UK’s UKIVAS registry, the French Vasculitis Study Group registry, the Czech Vasculitis Registry, the Polish Vasculitis Registry POLVAS, the new GEVAS German/Austrian/Swiss registry and Sweden’s Skåne Vasculitis Inception Cohort, all partners in FAIRVASC. Pillar 2 of the European Joint Programme seeks to engage all 24 ERNs in creating an ecosystem of sustainable rare disease data storage and analysis. The foundation on which this will be built is on the concept of FAIRification as articulated by the GO-FAIR initiative (https://www.go-fair.org/go-fair-initiative/ ). ERN-RITA has the strategic objective of applying this approach to the suite of established rare immune disorder registries, beginning with the EUVAS complement.

One of the crucial tasks of the project is an analysis of the data quality from the FAIRVASC registries. The Data Quality Team on behalf of the consortium conducted an analysis of the following domains: uniqueness, consistency, completeness and correctness. Registries achieved a score of 100% in terms of uniqueness and consistency of data. The remaining parameters were not less than 94.3% when measured across all registries. These results allow us to consider federated data reliable and suitable for statistical analysis, and provide valuable guidance for further improving the quality of FAIRVASC data.