“…Following the 2005 Consensus Workshop that stressed the need for the regular collection and sharing of data across geographical boundaries, a concerted effort through funding from the European Society for Paediatric Endocrinology, an EUFP7 grant and subsequently the MRC UK, led to the development of the ESPE DSD Registry, which was succeeded by the European DSD Registry and subsequently the I-DSD Registry [23]. With allied projects such as the EU COST Action DSDnet, the FP7 project DSD-Life, the I-DSD Registry and its allied registry, I-CAH, has not only supported research activities but also paved the way to the benchmarking of services [3,24].…”