Background: Whilst adhering to the highest standards of data governance and security, the International DSD Registry (www.i-dsd.org) and the International CAH Registry (www.i-cah.org) allow standardised collection of data and promote multicentre collaboration across national boundaries and across multiple clinical and research disciplines.
Results: By April 2015, over 1600 cases had been added by registered users from 41 centres in 22 countries across four continents. A further 76 centres from another 24 countries covering all six habitable continents have registered as users. The median year of birth of cases entered is 1999 (range 19272014). The commonest disorder type is disorders of androgen action followed by disorders of gonadal development. The Registry has been developed into an optional modular structure for adding clinical data and supports the development of new primary research through generation of new modules (such as the newly launched CAH module which allows the collection of sequential clinic data) and also supports secondary research on the existing dataset. With the development of I-CAH, an increasing number of CAH cases have now been included and currently exceed 300. Other developments over the last year include the development of patient/participant access and the involvement of clinical users in a survey performed by DSDnet Details of current and past studies that have used the I-DSD Registry are available at its website. In addition to supporting research and surveys, the Registry also acts a database of experts and centres of expertise.
Conclusions: The I-DSD and I-CAH Registries are open to new researchers and clinical users who can register at www.i-dsd.org (I-DSD) or www.i-cah.org (I-CAH). In addition to acting as a resource for performing studies, the I-DSD Registry is facilitating the development of a network of DSD centres and specialists and forms the backbone of initiatives such as DSDnet. In case of queries please contact the I-DSD Project Manager, J Bryce (Jillian.Bryce@glasgow.ac.uk).
01 Oct 2015 - 03 Oct 2015