FAIRVASC – building registry interoperability to inform clinical care
FAIRVASC is a research project of the European Vasculitis Society (EUVAS) and RITA European Reference Network, bringing together leading scientists, clinicians and patient organisations. The FAIRVASC consortium is made up of 10 partners who represent all of these areas of patient care, also substantial support from VIFOR PHARMA should be acknowledged. There are many important gaps in our knowledge about why and how vasculitis occurs, why some people seem to be more susceptible than others, how the disease process acts inside the body and whether different kinds of vasculitis should be treated in different ways.
As the condition is rare, there are relatively few patients in any one European country. We, therefore, need to analyse data at a European level so that we have enough patient data to discover these important missing facts.
FAIRVASC will use 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. The programme will ensure that all included registries are FAIR and that the infrastructure developed is aligned with developments in the European Joint Programme.
In FAIRVASC, this large new European resource will be analysed to identify features (clinical and physical characteristics, etc.) that predict how a patient’s illness will develop, and what their major health risks are. These markers can, in the future, be developed into new predictive tools that help doctors to choose the best treatment options for the individual patient.
Research into the rare condition – Vasculitis (an acquired, immune mediated inflammatory disease involving blood vessels of many tissues and organs), needs sufficiently large quantities of data to enable well-informed conclusions about treatments and possible cures. It is thus essential to combine the databases of patient registries of several countries to build a dataset of sufficient size to enable meaningful research.