The Jagiellonian University Medical College participates in the FAIRVASC project, aimed at developing European IT infrastructure enabling the creation of interoperable databases on a group of uncommon but serious multisystem autoimmune disorders characterized by blood vessel inflammation, jointly referred to as ANCA-associated vasculitis (AAV). The project is funded by the European Joint Programme on Rare Diseases and the National Research and Development Centre. Its total budget is 2.3 million euros.
Research into rare diseases requires access to big data, whereas each European country has only a limited number of patients suffering from these conditions, and, consequently, a limited access to data on these diseases, including their possible course and, especially, the available treatment methods. In Poland, the information on patients with blood vessel inflammations are systematically collected within the framework of POLVAS, a research consortium that brings together 12 Polish medical centres, led by the JU Medical College.
The main goal of the FAIRVASC project is to link vasculitis registries across Europe into a single European dataset using semantic-web technologies, in order to carry out widescale research on characteristics, natural course, health hazards, and optimal, individualised forms of treatment of this disease. The enormous scope of the processed and standardised information will also serve as a model for combining other registries gathering data on rare diseases throughout Europe.
The project is run under the aegis of the European Vasculitis Society (EUVAS) and RITA European Reference Network. Its participants include scientists from Italy, Ireland, Sweden, France, Germany, the Czech Republic, France, Germany, and Poland. The Polish part is coordinated by Prof. Jacek Musiał from the JU MC Faculty of Medicine.
FAIRVASC is one of European research initiatives aimed at addressing specific problems faced by patients suffering from serious rare diseases. It also involves patient advocacy organisations, whereas the management support is provided by Pintail Ltd. and the European Institute for Innovation through Health Data.
