Endocrine Abstracts

Following the roll-out of the I-DSD Registry in the 2000s, there was a consensus view that there was a need for a registry for congenital adrenal hyperplasia (CAH) and this was launched in 2014 as a dedicated module within the original registry. There are approximately 150 centres from 50 countries that are currently using the I-DSD/I-CAH/I-TS family of registries and between them there are almost 3,000 cases of CAH that have now been entered. In addition to supporting and promoting research, the I-CAH Registry can act as a tool for care quality improvement and surveillance of novel therapies. Its robust governance ensures adherence to international standards for data protection while promoting research in rare conditions. For further information visit https://sdmregistries.org/.