FAIRVASC - building registry interoperability to inform clinical care
Project title: FAIRVASC - building registry interoperability to inform clinical care
Project start date: 1. 6. 2020
Project completion date: 31. 5. 2023
Project budget: a total of EUR 2 299 091, of which EUR 195 220 for VFN,
mandatory co-financing from own resources is not required
Project guarantor (department): Department of Nephrology
Identification number of the project at the Ministry of Education: 8F20003
VFN participates in the project as one of the partners of the international consortium, the main researcher is MUDr. Zdenka Hruskova, Ph.D. from the Department of Nephrology. The project coordinator is the University of Florence from Italy.
Research into rare diseases, such as vasculitis, requires a large amount of data to draw sufficient conclusions about treatment and optimal patient care. However, there are relatively few patients in each European country, so it is necessary to combine data from patient registries in different countries to create a large enough data set for meaningful research.
FAIRVASC is a research project of the European Vasculitic Society (EUVAS) and the European Reference Network (ERN) RITA bringing together scientists, clinicians and patient organizations. Using the technologies of the so-called semantic web, data from vasculitic registers in Europe will be combined into a "single pan-European data set", thus providing a basis for future research into these diseases. The program ensures that the data provided by individual registers comply with the principles of FAIR (Findability, Accessibility, Interoperability, Reusability). Ensuring the legal and ethical aspects of data sharing is a priority in the project, and patient organizations will also ensure that patients' rights are respected.
The resulting new combined data source will be further analyzed in the project and will look for clinical signs and characteristics of patients, which predict how the disease will develop and what are the main risks in each group of patients. In the future, these predictive tools could help physicians in choosing the optimal treatment and treatment for individual patients.
The project is supported under the INITIATIVE IN THE FIELD OF RARE DISEASES, ERA-Net for Research Programs on Rare Diseases (2014-2019) - CALL (EJP RD) JTC 2019