FAIRVASC: FAIRVASC – building registry interoperability to inform clinical care

Research into vasculitis needs large enough quantities of data to be able to draw well- informed conclusions about treatments and possible cures. However, there are relatively few vasculitis patients in any one European country. It is essential to combine the databases of patient information (‘registries’) of several countries, to build a large enough dataset to enable impactful research. FAIRVASC is a research project of the European Vasculitis Society (EUVAS), bringing together leading scientists, clinicians and patient organisations. FAIRVASC will use modern semantic-web technologies to link vasculitis registries across Europe into a ‘single European dataset’, and thus open the door to new research into these challenging diseases. Importantly, the legal and ethical aspects of such international data sharing are a high priority – a dedicated legal team will ensure that all activities comply with GDPR and other regulations, while the main European vasculitis patient organisation will be active throughout, ensuring that patient priorities are respected. In FAIRVASC, this large new European dataset will be analysed to identify clusters of clinical features that predict how a patient’s illness will develop, and what their major health risks are. Using artificial intelligence approaches, these clinical features can then be used to develop predictive clinical tools that allow a personalised approach to healthcare delivery.