FAIRVASC - building registry interoperability to inform clinical care

点击翻译按钮获取中文摘要

Research into the rare condition vasculitis needs sufficiently large quantities of data to enable well-informed conclusions about treatments and possible cures. However, there are relatively few patients in any one European country. 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.FAIRVASC is a research project of the European Vasculitis Society and RITA European Reference Network, bringing together leading scientists, clinicians and patient organisations. 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 (findable, accessible, interoperable, reusable) and that the infrastructure developed is aligned with developments in the European Joint Programme.Importantly, the legal and ethical aspects of such international data sharing are a high priority – a dedicated team will ensure that all activities comply with the 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 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.