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.
SDMregistries is based at the University of Glasgow and managed by the Office for Rare Conditions Registries. SDMregistries is supported through a wide range of sources that includes fees incurred by investigators for obtaining data for research, project grants and income from the biennial symposium. The Office for Rare Condition Registries team is also supported through funding that the Office receives from industry for GloBE-Reg, a registry platform for post approval surveillance studies of novel therapies.
- The Registries
- Governance
- Steering Committee
- Data Access Committee
- Learning & Training Committee
- Quality Improvement Committee
- Project Management Group
- Activity Report
- Contact
- Privacy Notices
Last revised