Project: FAIRVASC - building registry interoperability to inform clinical care
| Acronym | FAIRVASC (Reference Number: EJPRD19-200) |
| Project Topic | Research into vasculitis needs large enough quantities of data to be able to draw well-informed conclusions about treatments and possible cures. However, there are relatively few vasculitis patients in any one European country. It is essential to combine the databases of patient information (‘registries’) of several countries, to build a large enough dataset to enable powerful research. FAIRVASC is a research project of the European Vasculitis Society (EUVAS), bringing together leading scientists, clinicians and patient organisations. FAIRVASC will use modern 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. Importantly, the legal and ethical aspects of such international data sharing are a high priority – a dedicated legal team will ensure that all activities comply with GDPR and other regulations, while the main European vasculitis patient organisation will be active throughout, ensuring that patient priorities are respected. In FAIRVASC, this large new European dataset will be analysed to identify biomarkers (genetic markers, 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 tests that help doctors to choose the best treatment options for the individual patient. |
| Network | EJP RD |
| Call | 1st EJP RD Joint Transnational Call for Rare Diseases Research Project (JTC 2019) |
Project partner
| Number | Name | Role | Country |
|---|---|---|---|
| 1 | Meyer's Children Hospital | Coordinator | Italy |
| 2 | Trinity College Dublin | Partner | Ireland |
| 3 | Assistance Publique Hopitaux de Paris | Partner | France |
| 4 | Lund University | Partner | Sweden |
| 5 | Universitaet zu Luebeck | Partner | Germany |
| 6 | Jagiellonian University Krakow | Partner | Poland |
| 7 | General University Hospital in Prague | Partner | Czech Republic |
| 8 | University of Glasgow | Observer | United Kingdom |