(September 22nd 2020) A new €2.3 million research project (FAIRVASC) funded by the European Joint Programme on Rare Diseases has been launched, aiming to study the rare condition Vasculitis with a Big Data Toolkit. Research into the rare and debilitating 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.
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.
FAIRVASC is led by Professor Augusto Vaglio (Professor of Nephrology, University of Firenze, and Consultant Nephrologist, Meyer Children’s Hospital, Firenze) and Professor Mark Little (Consultant Nephrologist at Tallaght University Hospital and Principal Investigator at ADAPT (a world-leading SFI Research Centre for Digital Media Technology hosted by Trinity College Dublin). Professor Vaglio comments ‘FAIRVASC aims at federating registries for ANCA-vasculitis, which will enable large- scale epidemiological studies. Patients will benefit from new knowledge on rare diseases and long-term outcomes’
The full consortium receiving funding is: Meyer Children’s Hospital (Italy), ADAPT, Trinity College Dublin (Ireland), 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).
Professor Little adds ‘Getting FAIRVASC off the ground has been an exciting and challenging endeavour, not made any easier by the SARS-Cov2 pandemic. We have built an excellent multi-disciplinary, multi-site team to start mapping each registry dataset onto a common schema. The goal is a user interface that will allow queries to be posed over the combined dataset of >11,000 patients with Vasculitis’.
IN FAIRVASC 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 Professor Dipak Kalra.
For more information about the FAIRVASC project please see https://fairvasc.eu/