The I-DSD Registry was developed following the International Consensus Workshop on DSD hosted by the European Society of Paediatric Endocrinology (ESPE) and the Lawson Wilkins Paediatric Endocrine Society of North America in 2005. The initial ESPE DSD Registry was developed with a small project grant from ESPE in 2006 with partners from Glasgow, Cambridge, Lübeck, Pisa and Rotterdam. This registry evolved into the EuroDSD Registry, funded by EUFP7, between 2008 and 2011 and then into the International DSD (I-DSD) Registry funded by the UK MRC, between 2011 and 2017. During this period, the I-DSD worked closely with the EU COST Action DSDnet, which facilitated consultations with patients, researchers and health care professionals and led to user acceptability testing as well as guidance on the data sets that should be collected routinely.
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