FAIRVASC – building registry interoperability to inform clinical care

The UKIVAS (UK and Ireland Vasculitis Rare Disease Group) Registry

The UKIVAS (UK and Ireland Vasculitis Rare Disease Group) Registry (https://ukivas.ndorms.ox.ac.uk/) is a collaboration between patients, clinicians and scientists to create the first comprehensive database of vasculitis patients in the UK and Ireland. The Registry contains information on patients with systemic vasculitis attending numerous centres across the UK and Ireland. Our long-term vision is that, through longitudinal data collection, we will build a granular picture of the clinical course of vasculitis in the modern era, thereby enhancing the evidence base for diagnosis and treatment of patients with vasculitis. Currently we have collected cross-sectional records for several thousand patients and have maintained longitudinal data for a subset of these.