The EuroWABB project is a new initiative, funded by the EU under the Framework 7 e-Health programme, to investigate Rare Diabetes namely Wolfram, Alstom and Bardet Biedl.
This European Rare Diabetes registry, developed by the National e-Science Centre based at the University of Glasgow, is central to the project within the EuroWABB project and provides a means of connecting the research centres and the clinical centres within a Virtual Research Environment (VRE).
Rules and Responsibilities
Use of the registry is subject to certain rules and responsibilities constituting fair usage and protecting the rights of patients whose details are contained within the registry, as well as the clinicians. In summary these include:
- Only summary patient information allowing potential collaborations will be held in the registry; detailed information that could allow identification will not be held.
- Users will only be allowed to browse the registry following approval from the consortium.
- Users should only log on with their username.
- Audit tracking software monitors access patterns, machine locations and user IDs. With this information it is possible to accurately track and identify any illegal usage.
- All information stored in the registry, and access to that information, conforms to the UK Data Protection Act (1998).
Standard Operating Procedures
The EuroWABB Registry has developed the following documents to guide the use of the Registry. Please read them carefully
- Standard operating procedures ethics etc.
The following actions can be completed using the registry:
- Browsing limited clinical information already within the registry
- Uploading clinical information to be shared within the consortium
- Editing or deleting records (that you own)
For any technical queries about the registry please contact Susan McCafferty.
For any clinical queries about the information in the Registry please contact Prof. Timothy Barrett .
For more information about the EuroWABB Programme, please see the main project site: EuroWABB