FAIRVASC – building registry interoperability to inform clinical care

Registry discovery

Registry discovery : different registries contain different types of data, stored in different formats, and describing diverse patient populations. A key challenge for rare disease research is to identify the registries that hold the data needed for the research question of interest, to verify that the data held does, in fact, suit the research question, and to assess whether or not access to the data will be possible. FAIRVASC will profile ANCA-associated vasculitis (AAV) registries and make them identifiable via an online dashboard service.  Sampling of the data held at the registries will be supported, so that users can verify that the data does, in fact, meet their needs. Registry profiles will include access and regulatory metadata, using ADA-M (Automatable Discovery and Access Matrix).