The European Disorder of Sex Development Registry: A Virtual Research Environment

被引:34
作者
Ahmed, S. F. [1 ]
Rodie, M.
Jiang, J. [2 ]
Sinnott, R. O. [2 ]
机构
[1] Royal Hosp Sick Children, Dept Child Hlth, Dev Endocrinol Res Grp, Glasgow G62 8NT, Lanark, Scotland
[2] Univ Glasgow, Natl E Sci Ctr, Glasgow, Lanark, Scotland
关键词
Database; Intersex; Network;
D O I
10.1159/000313434
中图分类号
Q [生物科学];
学科分类号
07 ; 0710 ; 09 ;
摘要
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. Copyright (c) 2010 S. Karger AG, Basel
引用
收藏
页码:192 / 198
页数:7
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