FAIRVASC

The R&D project FAIRVASC aimed to bridge several important gaps in the then-present knowledge about vasculitis, a rare immune-mediated inflammatory disease involving blood vessels of many tissues and organs.

Research into vasculitis needed sufficiently large quantities of data to enable well-informed conclusions about treatments and possible cures. The low prevalence of vasculitis, however, impeded such research from being conducted at any single institution. Therefore, the FAIRVASC project combined and aggregated information from patient registries across countries to build a substantial dataset to enable meaningful research.

i~HD’s role was to advise on information governance topics such as data protection and GDPR, to assist in the preparation of legal and regulatory requirements. They also guided the involvement of patient representatives in the project to help support engagement activities.

Regarding data quality, they provided guidance to funded FAIRVASC personnel and local registry teams in the preparation and realization of the data quality assessments that were conducted at each registry site.