Researchers awarded €2.3 million to study rare disease with advanced data linkage technologies

A rare condition known as “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.

FAIRVASC is a research project of the European Vasculitis Society and the RITA European Reference Network for rare immune disorders. It is bringing together leading scientists, clinicians, and patient organisations from across Europe to approach vasculitis with a Big Data toolkit.

The European Joint Programme on Rare Diseases is opening the door to new research into these challenging diseases by awarding the consortium €2.3 million. These funds will be put toward using semantic-web technologies to link vasculitis registries across Europe into one “single European dataset.”

Key Principal Investigators involved in FAIRVASC are Mark Little, Professor of Nephrology in Trinity, Consultant Nephrologist at Tallaght University Hospital and Principal Investigator at ADAPT (the world-leading SFI Research Centre for Digital Media Technology hosted by Trinity), and Declan O’Sullivan, Professor in Computer Science and Principal Investigator at ADAPT.

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.

The full consortium receiving funding is: Meyer Children’s Hospital (Italy), ADAPT, Trinity, University of Paris Descartes (France), Lund University (Sweden), Universitaet zu Luebeck (Germany), Jagiellonian University Krakow (Poland), General University Hospital in Prague (Czech Republic), Vasculitis Stichting (Netherlands), and University of Glasgow (UK, funding provided by Vifor Pharma).

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.

Project Management is being supplied by Pintail Ltd.

Data governance expertise is provided by the European Institute for Innovation through Health Data, Belgium, led by Prof Dipak Kalra.