FAIRVASC: FAIRVASC – building registry interoperability to inform clinical care

Joint Transnational Call 2019 (JTC2019)

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.

  • Vaglio, Augusto (Coordinator)
    Meyer’s Children Hospital [ITALY]
  • Little, Mark
    Trinity College Dublin [IRELAND]
  • Terrier, Benjamin
    Assistance Publique Hopitaux de Paris [FRANCE]
  • Mohammad, Aladdin
    Lund University [SWEDEN]
  • Lamprecht, Peter
    Universitaet zu Luebeck [GERMANY]
  • Musial, Jacek
    Jagiellonian University Krakow [POLAND]
  • Hruskova, Zdenka
    General University Hospital in Prague [CZECH REPUBLIC]
  • Basu, Neil
    University of Glasgow [UNITED KINGDOM]
  • Vasculitis Stichting [THE NETHERLANDS]
  • Tuscany Region (RT/TuscReg), Tuscany (Italy)
  • Health Research Board (HRB), Ireland
  • French National Research Agency (ANR), France
  • Swedish Research Council (SRC), Sweden
  • German Research Foundation (DFG), Germany
  • National Centre for Research and Development (NCBR), Poland
  • Ministry of Education, Youth and Sports (MEYS), Czech Republic
  • Own funding