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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 1 : Coordination of the Project

Workpackage description

Task 1: Project Coordination

The coordinator will oversee the data management within the Virtual Registry and Information Environment (VRIE) created in WP06 and connected to all other WPs and will implement the scientific structure. He will be responsible for supervising the security and ethical standards for all WPs. He will be responsible for chairing the Project Management Committee and for taking all actions to enable proper decision making by these decision bodies. Furthermore, he will ensure the smooth operation of the project and guarantee that all efforts are focused towards the objectives.

Task 2: The Project Management Committee (PMC)

Membership is made up of all the associate partners. The PMC is in charge of monitoring all activities towards the objectives of the project in order to deliver as promised, in due time and in the budget. The tasks include: to grant proper implementation of the partners’ respective rights and obligations in accordance with the contractual framework of the project and The Grant Agreement; and to formulate and agree on standard operating procedures within EURO-WABB. The PMC shall: control the execution of the project with regards to the project schedule and the description of work annexed to the Grant Agreement and monitor corrective actions; and decide on the Detailed Implementation Plan.

Task 3: The Scientific Advisory Committee (SAC)

The scientific advisory committee will ensure a high standard of research and monitor the progress of the project. Membership will include all collaborating partners. Whenever appropriate, it will consult the PMC and make recommendations as to improve their performance.

Task 4: Maximising entry of core datasets to the EURO-WABB Registry.

The coordinator will take lead responsibility for supporting and encouraging physician colleagues to use the Registry across the EU. This will require leadership and support to associate partners.