Disorders of sex development (DSD) are a rare group of conditions which require further research. Effective research into understanding the aetiology, as well as long-term outcome of these rare conditions, requires multicentre collaboration often across national boundaries. The EU-funded EuroDSD programme (www.eurodsd.eu) is one such collaboration involving clinical centres and clinical and genetic experts across Europe. At the heart of the EuroDSD collaboration is a European DSD registry and a targeted virtual research environment (VRE) that supports the sharing of DSD data. Security, ethics and information governance are cornerstones of this infrastructure. This paper describes the infrastructure that has been developed, the inherent challenges in security, availability and dependability that must be overcome for the enterprise to succeed and provides a sample of the data that are stored in the registry along with a summary analysis of the current data sets.

1.
Ahmed SF, Cheng A, Dovey L, Hawkins JR, Martin H, et al: Phenotypic features, androgen receptor binding, and mutational analysis in 278 clinical cases reported as androgen insensitivity syndrome. J Clin Endocrinol Metab 85:658–665 (2000a).
2.
Ahmed SF, Khwaja O, Hughes IA: The role of a clinical score in the assessment of ambiguous genitalia. BJU Int 85:120–124 (2000b).
3.
Ahmed SF, Dobbie R, Finlayson AR, Gilbert J, Youngson G, et al: Prevalence of hypospadias and other genital anomalies among singleton births, 1988–1997, in Scotland. Arch Dis Child Fetal Neonatal Ed 89:F149–F151 (2004).
4.
Bebermeier JH, Brooks JD, DePrimo SE, Werner R, Deppe U, et al: Cell-line and tissue-specific signatures of androgen receptor-coregulator transcription. J Mol Med 84:919–931 (2006).
5.
Duguid A, Morrison S, Robertson A, Chalmers J, Youngson G, et al: The psychological impact of genital anomalies on the parents of affected children. Acta Paediatr 96:348–352 (2007).
6.
Gottlieb B, Beitel LK, Wu JH, Trifiro M: The androgen receptor gene mutations database (ARDB): 2004 update. Hum Mutat 23:527–533 (2004).
7.
Hughes IA, Houk C, Ahmed SF, Lee PA; LWPES Consensus Group; ESPE Consensus Group: Consensus statement on management of intersex disorders. Arch Dis Child 91:554–563 (2006).
8.
Lux A, Kropf S, Kleinemeier E, Jürgensen M, Thyen U; DSD Network Working Group: Clinical evaluation study of the German network of disorders of sex development (DSD)/intersexuality: study design, description of the study population, and data quality. BMC Public Health 9:110 (2009).
9.
Sinnott RO, Ajayi O, Jiang J, Stell AJ, Watt J: User-oriented security supporting inter-disciplinary life science research across the grid, in Konagaya A, Arzberger P, Tan TW, Sinnott R, Angulo D (eds): Special Edition on Life Science Grids, New Generation Computing Journal, Springer, 2007, pp 339–354.
10.
Sinnott RO, Grid Security, Grid Computing: Technology, Service and Application. Boca Raton, CRC Press, 2008, pp 307–334.
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