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The cornerstones of the European DSD registry model are site autonomy and the detailed definition and enforcement of standard operating procedures on access, usage and contribution of data to the registry. Details of the standard operating procedures are available at https://tethys.nesc.gla.ac.uk. Each clinical site is solely responsible for deciding what datasets it can share, with which partner sites and in what context. To support this, the design of the registry has been driven by security, incorporating both the needs of the clinical community and ethical oversight required on information governance. The registry provides various functionality including querying, uploading/edit/deletion of DSD cases and crosssearching of cases. The greatest challenge to date related to data heterogeneity, software and data storage heterogeneity and language heterogeneity has been overcome by developing a consensus around a core data model which is largely based on the revised DSD nomenclature [Lux et al., 2009]. The registry platform allows data entry of sequential clinical examinations and development of specific modules, such as a genetic module which records details of method and results of genetic analyses, the mutations that may have been found and the methods of analysis used.

The development of the registry and associated VRE draws heavily on e-Science tools and expertise in information security at the National e-Science Centre (NeSC) at the University of Glasgow (www.nesc.ac.uk). This VRE provides an extensible and personalisable framework that integrates applications, services and resources targeted to the specific-research needs of the DSD clinical and research collaborators. Successful VREs allow aspects of distribution of resources and heterogeneity of data to be made seamless and transparent, targeted to the needs and roles of the scientists. VREs ensure that the data can only be accessed by those with sufficient privileges. A variety of security-supporting portal-based tools [Sinnott et al., 2007] and advanced authorisation solutions [Sinnott et al., 2008] have been utilized for this purpose. User and institute-oriented access control is achieved through the Internet2 Shibboleth technologies (http://shibboleth.internet2.edu) which supports federated access control and delivery of digitally signed X509-based attribute certificates. These are used for automatic configuration of portal contents, e.g. for restriction of access and usage of associated datasets according to the assigned user role within the portal. Figure 1 shows how the registry is central to the EuroDSD research programme and how it acts as a key component of the VRE where clinical data and research results are deposited securely and shared by centres across Europe with appropriate privileges to develop and design new studies.