Objectives

• Supporting the IT requirements of EuroDSD research partner sites (task 1)
• Design, develop, test, deploy and subsequently maintain a web-based VRE that facilitates multi-centre collaborative research linking clinical and genetic datasets held in respective participant centres and/or in centralised repository at Glasgow (task 2)
• Continuous evaluation of security, risk assessment and ethical evaluation of VRE (task 3)
• Evaluation and enhancement usage of infrastructure by users, site administrators and security/policy experts through targeted case studies across WP02-06 (task 4)

Workpackage Description

 

Task 1: Supporting the IT requirements of the partner sites

 

A scoping exercise shall be performed at the beginning to assess the support requirements of individual partner sites that have not been involved in the ESPE DSD Register project. Partner sites responsible for submitting clinical data into the EuroDSD dataset shall be invited to submit cases that fit the requirements of the investigators at partner sites in WP02-06. A key deliverable shall be a report on the number of cases that are entered onto the register. The quality and adequacy of the data that are submitted will be reviewed at regular intervals through electronic validation systems.  

 

Task 2: Design, development, testing and maintenance of VRE

We aim to develop a VRE that supports a variety of different kinds of EuroDSD research and linkage of resources across the partner sites. The VRE will provide capabilities to link clinical data resources on a case-by-case basis. The cornerstone of our model will be site autonomy and each site will be solely responsible for deciding what data sets it can share, with which partner sites and in what context. The design of the VRE will be driven by security, incorporating both the needs of the clinical community and ethical oversight required on information governance. Where feasible we will support the automatic extraction of clinical data sets across partner sites and their sharing across the EuroDSD consortium subject to security and ethical requirements. The VRE will offer an easy-to-use browser-based access exploiting existing experience of NeSC in utilising fine grained authorisation infrastructures in the e-Health domain. Deployment of the system will occur once prototypes have been explored and fully tested incorporating feedback from clinicians, ethical reviewers and security experts. We will continually monitor the access and usage of this infrastructure to ensure that all agreements are being strictly adhered to. The VRE will support a portfolio of tools supporting the bioinformatic needs of the partner sites.

Task 3: Continuous security evaluation, risk assessment and ethical evaluation of VRE

We will undertake a risk analysis through identification of threats, ethical and legal issues raised by key stakeholders, and provide a detailed analysis of what needs to be provided by an IT infrastructure and by collaborating organisations to mitigate against these risks. We will maintain the highest standards of good ethical practice ethics and consult national and European bodies. The VRE will be personalised to individual researchers and be completely security driven. This requires analysis of existing processes, systems and tools for data production, data management and security at the DSD partner sites; definition and development of local and cross-site data access and integration policies through advanced role/attribute based access security models; development, deployment and continued monitoring of an e-Infrastructure supporting access, integration, linkage and provenance of data sets across partner sites. The VRE shall have a steering group that will consist of members of the research programme as well as other identified advisors.

Task 4: Evaluation by partner sites

As well as supporting rapid prototyping and incorporating feedback from the scientific community directly involved in the project, we will organise workshops through targeting specific aspects of the VRE throughout the course of the project. These workshops will raise the profile of the work as a whole, provide an opportunity for further collaborations, and shed insight into lessons learned in developing EU-wide security focused on collaborative virtual organisations.