FAIRVASC – building registry interoperability to inform clinical care

FAIRVASC 2.0

FAIRVASC is a Europe-wide research project initiated by Prof. Mark Little (University of Dublin, Ireland) and Prof. Augusto Vaglio (University of Florence, Italy), funded by the European Joint Programme on Rare Diseases (EJPRD 2019). Its goal is to create Findable, Accessible, Interoperable, Reusable (FAIR) access to a network of ANCA-Associated Vasculitis (AAV) registries, enhancing research and care for AAV. The project has developed an infrastructure linking seven national/regional AAV registries into a single European dataset, providing a rich, reliable resource for ethical and secure research.

This infrastructure uses Semantic Web Technologies for privacy-compliant federated querying and semantic interoperability, enabling high-quality clinical research and federated learning for complex statistical modeling.

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.

Starting from December 1, 2023, Prof. Giacomo Emmi (University of Trieste, Italy) took over the leadership, focusing on:

  • Coordinating project management and meetings
  • Securing long-term funding
  • Refining GDPR-compliant data governance
  • Optimizing the web interface
  • Maintaining scientific collaboration and academic output
  • Recruiting technical and clinical experts
  • Engaging with third-party stakeholders, including pharma companies and patient advocacy organizations
  • Developing secret sharing methods for federated analysis
  • New registries onboarding

These efforts aim to transition the Consortium towards new funding and expanded registry engagement, positioning FAIRVASC as a benchmark infrastructure for AAV and potentially other rare diseases. FAIRVASC is currently a research project liaising with the European Vasculitis Society (EUVAS).