EU-funded R&D project
Big data research project on vasculitis
The R&D project FAIRVASC aims to bridge several important gaps in the present knowledge about vasculitis, a rare immune-mediated inflammatory disease involving blood vessels of many tissues and organs.
Research into vasculitis needs sufficiently large quantities of data to enable well-informed conclusions about treatments and possible cures. The low prevalence of vasculitis however impedes such research being conducted at any single institution. Therefore, the FAIRVASC project combines and aggregates information from patient registries across countries, to build a substantial dataset to enable meaningful research.
i~HD’s role is to advise on information governance topics such as data protection and GDPR, to assist in the preparation of legal and regulatory requirements. We also guide the involvement of patient representatives in the project, to help support engagement activities.
Regarding data quality, we provide guidance to funded FAIRVASC personnel and local registry teams in the preparation and realisation of the data quality assessments that are conducted at each registry site.
FAIRVASC is funded by the European Joint Programme on Rare Diseases and Horizon2020.
Meyer’s Children’s Hospital, Florence, Department of Medicine – Trinity College Dublin Trinity Translational Medicine Institute, Trinity Centre for Health Sciences – ADAPT Centre for Digital Content, O’Reilly Institute, Trinity College Dublin – AP-HP (Assistance Publique – Hôpitaux de Paris) – Lund University, Clinical Sciences, Rheumatology, Lund and Dept. of Rheumatology, Skåne University Hospital, Lund – University of Lübeck, Department of Rheumatology – Jagiellonian University Krakow, Department of Medicine – General University Hospital in Prague, Department of Nephrology – University of Glasgow, Institute of Infection, immunity & Inflamation – Vasculitis Stichting and Vasculitis International – Vasculitis Ireland Awareness – Vasculitis UK – Pintail Ltd. – i~HD