ERDRI.mdr - Central Metadata Repository

ERDRI.mdr serves to ease the integration of heterogeneous data from different rare disease registries. For this purpose it contains a collection of metadata which specifies the used data elements of a registry including the designation of the used data elements, their definition and units of measurement. The more registries define their data elements in a comprehensible way and use identical data definitions, the easier it is to use these data for overarching studies and research questions.

In the long term the harmonisation of used data elements and data structures in existing and upcoming registries is aimed at. The use of the "Set of common data elements for rare diseases registration" by each registry is a first step towards this objective and the interoperability of rare disease registries.

Before entering data you are strongly advised to make yourself familiar with the MDR environment. You can do so at the MDR demo instance, which can be accessed with the same credentials as the production MDR site.

Please note that the ERDRI MDR is not designed to be operated on small screens. Please use a device with a larger screen size to get a pleasant user experience.