FAIRVASC – building registry interoperability to inform clinical care

The Irish Rare Kidney Disease (RKD) Registry

The RKD registry and Biobank (https://www.tcd.ie/medicine/thkc/research/rare.php) was established in 2012 and aims to address an unmet need in the study of rare kidney disease in Ireland: facilitation of clinical studies when sporadic cases are scattered throughout many hospitals in Ireland. Existing centre-based research facilities serve this need poorly; networked collaboration across all the CRFs in the country is required as even large academic hospitals may only encounter a handful of cases. The majority of recruits have the rare disease ANCA vasculitis (with linking of the Irish registry database with the pan-UK UKIVAS initiative).