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).
First publication in the works
The U-IMD Beneficiaries started the work on writing the first U-IMD publication, introducing registry, network and underlying concept and...
U-IMD reached the critical milestone of enrolling more than 1000 patients
As of August 2020 1047 patients with 171 different rare metabolic diseases have been enrolled in U-IMD.
The U-IMD protocol was successfully amended for a longer runtime. The official end of the EU funded phase of the project is now 31.07.2021
As a project placed in the public health sector, having health care providers as its Beneficiaries and major Stakeholders and being...