The I-DSD Registry was conceived following the Chicago Consensus meeting in 2005 and the prototype ESPE DSD Register became the EuroDSD Registry in 2008 and the International DSD (I-DSD) Registry in 2011. The original platform subsequently developed dedicated modules for CAH (I-CAH, 2014), TS (I-TS, 2022) and HH (I-HH, 2025) and this common platform was renamed the SDMregistries platform.
In 2025, SDMregistries had a network that reached 241 centres in 65 countries on all the continents. Of these, 167 active centres from 46 countries use the registries and had entered over 10,200 cases for supporting research.
The platform is managed by the Office for Rare Conditions Registries team at the University of Glasgow and it is supported through a wide range of sources that includes fees incurred by investigators for obtaining data for research, project grants, income from the biennial symposium. For further information visit the Studies and Learning & Training pages.
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