U-IMD is the acronym for the Unified European Registry for Inherited Metabolic Disorders. The overall aim of this project is to promote health for children, adolescents and adults affected by rare Inherited Metabolic Disorders (IMDs). The project has three major activities:
- Establishing the U-IMD patient registry as a tool of the European Reference Network for Hereditary Metabolic Disorders (MetabERN).
U-IMD will fully implement the common data elements of the European Platform on Rare Disease Registration (EU RD Platform) and will be integrated into the European Rare Disease Registry Infrastructure (ERDRI). U-IMD will be the first unified European registry that encompasses all IMDs.
- Upgrading already existing IMD registries to the standard of U-IMD, starting with the registry of the International Working Group on Neurotransmitter Related Disorders (iNTD).
- Developing a standard for minimal core data sets shared by the MetabERN and the European Rare Kidney Disease Reference Network (ERKNet).
2018 MetabERN Board Meeting
On the 9th of April 2018 the U-IMD Coordinator presented the outlines of the project to the members of MetabERN during the course of a U-IMD focused...
Rare Diseases Registries Projects' Kick-off Meeting
On the 17th of April 2018 the representatives of all U-IMD beneficiaries participated in the Rare Diseases Registries Projects' Kick-off...