Publications of U-IMD consortium
The first publication introduces the registry, network and summarizes progress Opladen T, Gleich F, Kozich V, Scarpa M, Martinelli D, Schaefer F, Jeltsch K, Juliá-Palacios N, García-Cazorla Á, Dionisi-Vici C, Kölker S. U-IMD: the first Unified European registry for inherited metabolic diseases. Orphanet J Rare Dis. 2021 Feb 18;16(1):95. Link
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 implemented by experts working in the health care sector, many of whom are physicians, U-IMD was negatively impacted by the COVID-19 pandemic. As a result all Beneficiaries had to reduce the amount of work dedicated to the project or even had to temporarily put project related activities on hold. With the registry and the data gathered therein being the...
Poster Presentation of U-IMD at the SSIEM 2019.
First meeting of the U-IMD Evaluation Group at the EMG meeting in May 2019 in Lyon.
Official launch of the U-IMD registry in May 2019.
First meeting of the U-IMD Members Board at the MetabERN Meeting 2019.
Data gathering for the first natural history studies using U-IMD data has started
On the MetabERN Board Meeting 2019 it was agreed that U-IMD should demonstrate its capabilities by facilitating natural history studies, therefore the focus for data acquisition currently is directed at the following target diseases: Smith Lemli Opitz syndromeTyrosinemia type 1MSUDMukolipidosis type II/III
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 session that was part of the official program of the 2018 MetabERN Board Meeting.
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 Meeting in Luxembourg. The U-IMD Coordinator presented the outlines of the project to the Consumers, Health, Agriculture and Food Executive Agency (CHAFEA) and the others parties funded under the call HP-PJ-06-2016.