The I-DSD Registry was conceived following the Chicago Consensus meeting in 2005 when the need for pooling standardised information in cross border registries was identified as a priority. The prototype ESPE DSD Register became the EuroDSD Registry when it was supported by EUFP7 in 2008 and in 2011 it became the International DSD (I-DSD) Registry when it secured a grant from the UK MRC. In 2014, I-DSD developed a mirror site for I-CAH and in 2022, it launched another site for I-TS. All these registries use the same platform within which they have a dedicated module for these three groups of conditions.
The registries are currently supported from funding from a wide range of sources that includes fees incurred by investigators for obtaining data for research, project grants, income from the biennial symposium and unrestricted education grants from the pharmaceutical industry.
In 2023, I-DSD/I-CAH/I-TS has a network that reaches 260 centres in 63 countries on all the continents. Of these, 135 active centres from 45 countries use the registries and have entered over 7,500 cases where information can be shared for a range of purposes that have the ultimate aim of improving the health of people with these rare conditions.
Last revised