 |
Euro-WABB
The EURO-WABB Project is a collaboration of doctors, scientists and patient support groups from all over Europe. Within the EU Health Programme 2008-2013 and its call for promoting health through the creation of new registers for rare diseases, EURO-WABB is supported by The EU Directorate General for Health and Consumers (DG-SANCO) via its Executive Agency for Health and Consumers. The overall aim is for this register to be a key instrument to increase knowledge on these rare diseases, improve the lives of affected people through better management, and to develop clinical research.
Wolfram, Alström, Bardet-Biedl (WABB) and other rare diabetes syndromes
WABB syndromes constitute a group of rare, heritable disorders linked by intolerance of the body to glucose. Each of these syndromes affects other parts of the body, including hearing and vision. This Register is mainly directed towards Wolfram syndrome, Alström syndrome and Bardet-Biedl syndrome; however its scope includes some other rarer syndromes including Wolcott-Rallison syndrome and Thiamine-responsive mebaloblastic anaemia, deafness and diabetes syndrome. Long term studies on these syndromes are desperately needed to understand their natural history, relate genetic diagnosis to predicting outcomes, to establish a basis for evidence-based management, and to develop new treatments.
Structures
The project combines unique strengths by linking a European patient-based data collection registry (work package (WP) 6) with the development of widespread availability of genetic testing across the EU (WP-5), and the development of a core dataset of information and evidence based diagnosis and management pathways (WP-4). WP-1 focuses on coordination of the project, WP-2 on dissemination to patients, health professionals and health policy-makers, and WP-3 on evaluation of the project.
This registry, developed by the Melbourne eResearch Group based at the University of Melbourne, provides a means of gathering data about the conditions.
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 project consortium.
- 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.
- Privacy policy: The EuroWABB registry does not store or capture any personal information, but does log the user's IP address which is automatically recognised by the web server. The website and server logs are hosted by the Melbourne eResearch Group at the University of Melbourne and the IP information is accessed through tools provided by Google Analytics. We do not use cookies for collecting user information from the site and we will not collect any information about you except that required for conducting research within the consortium, enforcing consortium privacy rules, or for system administration of the registry.
Additionally, ethical consent for storing patient information in the registry will need to be obtained according to the statutes of your country and institution.
Contacts
For any technical queries about the registry please contact Dr Anthony Stell, or Prof Richard Sinnott.
