Single European Dataset linking vasculitis registries across Europe

FAIRVASC is a research project of the European Vasculitis Society (EUVAS) and RITA European Reference Network, bringing together leading scientists, clinicians and patient organisations. 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.

Vasculitis requires very large quantities of data in order for researchers to draw conclusions about possible treatments or cures. Since there are so few patients in any one European country, it is essential to combine the databases of patient registries of several countries. This will ensure a sufficient dataset is available for meaningful research and 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.

Key Principal Investigators involved in FAIRVASC are Prof. Declan O’Sullivan, and Prof. Mark Little, Professor of Nephrology in Trinity College Dublin, Consultant Nephrologist at Tallaght University Hospital and Principal Investigator at SFI ADAPT Research Centre.

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.

In addition, there is very strong patient involvement in the form of Vasculitis International, the European Vasculitis patient organisation, which is receiving direct funding from INSERM.