i~HD will contribute to the recently launched FAIRVASC project, putting to good use our core expertise in the fields of data quality and information governance.
FAIRVASC, funded by the European Joint Programme on Rare Diseases, 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 will combine and aggregate information from patient registries across countries, to build a substantial dataset to enable meaningful research.
Data governance and data quality
i~HD will advise on information governance topics such as data protection and GDPR, and will assist in the preparation of legal and regulatory requirements. We will also guide the involvement of patient representatives in the project, to help support engagement activities.
Regarding data quality, we will provide guidance to funded FAIRVASC personnel and local registry teams in the preparation and realisation of the data quality assessments that will be conducted at each registry site.
FAIRVASC is a research project of the European Vasculitis Society and RITA European Reference Network, bringing together leading scientists, clinicians and patient organisations.