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The EURO-WABB Project

An EU Rare Diseases Registry for Wolfram syndrome, Alström syndrome, Bardet-Biedl syndrome and other rare diabetes syndromes.

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Work Package 6 : Virtual Registry and Information Environment

Workpackage description

Task 1: Supporting the requirements of the EURO-WABB Registry Partner Sites.

We will scope the support requirements of partner sites for submitting clinical data to the EURO-WABB dataset. The quality and adequacy of the submitted data will be reviewed regularly from a clinical perspective. Electronic data validation systems will ensure that data sets conform to the agreed data models.

Task 2: Design, Development, Testing and Maintenance of EURO-WABB VRIE.

The VRIE will offer secure access to clinical and biomedical datasets for clinical and research partners; and education material on Wolfram, Alström and Bardet-Biedl diseases. All sites will be autonomous and define their own access and usage policies. The VRIE will support secure access to and sharing of data at local centre, national, and EU level data sharing. Discussion forums and information modules will be incorporated.

Task 3: Continuous security evaluation, risk assessment and ethical evaluation of EURO-WABB VRIE.

We will undertake a risk analysis identifying potential threats, ethical and legal issues raised by stakeholders; and put in place an IT infrastructure to mitigate against these risks. The VRIE will be completely security and user-driven. This will require definition and development of local and cross-site data access and integration policies through role/attribute based access control models using advanced security policy frameworks. User assigned privileges will be used to direct access to and use of VRIE contents.

Task 4: Evaluation by EURO-WABB Registry partner sites.

We recognise that the success of the VRIE will ultimately be determined by the buy-in from local physicians and the researchers themselves. To ensure that the VRIE meets the ethical and information governance criteria) we will organise workshops targeting specific aspects of the VRIE 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 lead to sustainability of the EURO-WABB Registry.