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Interoperable ERN on Rare and Undiagnosed Skin Disorders [ERN-Skin REGISTRY] [947690] - Project
Project abstract

Rare diseases need more means in order to help share information on research, diagnostics and also provide equity in treatment. Therefore the European Commission has developed a global European registry tool with functions to make data findable, accessible, interoperable and reusable. In parallel ERN-Skin is going to work with UMCG in order to build a central ERN-Skin registry that will receive patient information from different European sources and will push that information into ERDRI, the European global registry. First the new registry will be developed and interfaced with ERDRI, then connections will be established between existing registries in the different HCPs of ERN-Skin and the central ERN-Skin registry. The objective is to cover all diseases. Today there are roughly 20 000 patient records scattered in European HCPs for rare Skin diseases. This new process will enable additional HCPs that have no registry today, to fill-in forms. Therefore we can anticipate the total amount of records to increase a lot. The registry will be developed by UMCG on the Molgenis platform. Work has to be done on the homogenization of data, the required datasets in order to cover all diseases, the patients' consents. Dissemination will be crucial to make the tool sustainable: patients' organizations will be informed of the project and involved in its advancement, HCPs will be regularly informed and trained on the tool, statistics will be published regularly. Also, user guides will be available and webex demonstrations will be performed. A Super User will be in situ at Hospital Necker who will be the main point of contact for questions regarding the use of the central registry. This person will also follow-up on any new developments of the central ERN-Skin registry tool.