Methodological and Governance Guidelines for MS

This team works in the design of a guide for the setting up and governance of registries within the European Union

Developing and upgrading existing knowledge and practices according to the results of WP4.

Developing methodological and governance guidelines for setting up registries and their governance. A toolkit for the Member States will be developed with items such as: how to set up a patient registry, what ICT tools to use, the recommended information models, relationship to and dependence on Electronic Health Records and other issues; all with the aim to enable Member States to develop new registries or adapt existing registries with comparable elements and with the purpose of supporting existing EU projects.

Developing a knowledge management platform, providing knowledge and tools for Member States.