The project for the creation of a Meta data registry for the ERN RITA has been approved for funding by the European Commission and the first draft of the Registry is ready, currently under validation by the project partners, and the Registry will be published online in 2022.
It includes different access for each specific activity, such as a Public area for general information on the project and the partners, with a basic Search function; a Member area to have access to more detailed data and to communicate with Registry owners; a Registry Owner area to upload and manage individual registry’s data in the MeRITA registry.
The MeRITA meta-data registry will collect in aggregated fashion the Common Data Elements (CDEs) of the single participating registries while the ownership and independence of the single initiatives will remain unaffected by participation. The participation in the MeRITA project will ensure visibility and interoperability of the single initiatives, adherence to the EU RD platform (ERDRI) as per EU guidelines and will allow sharing essential clinical data according to the European Union’s standards.
EU Grant number 947180.
Project partners: IRCCS Istituto Giannina Gaslini (coordinator), Genoa; University Medical Centrum Utrecht; General University Hospital, Prague; Thessaloniki University School of Medicine; University Medical Centre Ljubljana; University of Latvia; Warsaw Children's Memorial Health Institute; Lithuanian University of Health Sciences, Kaunas; Center for Chronic Immunodeficiency, Medical Center University of Freiburg.