U-IMD UPDATE 2020
Under the CHAFEA grant HP-PJ-06-2016 the Unified Registry for Inherited Metabolic Diseases (U-IMD; https://www.u-imd-registry.org) was initiated in February 2018. The registry is a web-based patient registry encompassing all inherited metabolic diseases. The U-IMD registry will be used as a tool of MetabERN, enabling the network to generate patient data for research purposes that conforms to the standard of the European Rare Disease Registry Infrastructure (ERDRI; https://eu-rd-platform.jrc.ec.europa.eu/). The operational U-IMD registry was officially introduced at the last annual MetabERN meeting in Frankfurt and the first round of related projects was agreed. All members were invited to join the registry.
Thus far 11 members of MetabERN and one HCP which is not part of MetabERN have joined the project and more than 500 patient records have been added to the registry (see directly on the homepage of the registry: https://www.u-imd-registry.org/). While this is a great success, U-IMD is still in need of wider participation of the ERN to reach all of its aims.
In preparation of the next MetabERN annual meeting the U-IMD project wants to inform you on the current state of the project and motivate all MetabERN Members that not have joined yet, to consider to participate.