Mapping and Analysis of Existing Registries

This team undertakes actions aimed at the creation of a European Registry of patient registries.

Reviewing the existing literature from the field of interest, identify country level registries best practices and applied research methodology.

Identification of global registries best practice, definition of applied research methodology.

Collection of resources on knowledge management and Information Technologies (IT).

Analyses of the following issues: legal frameworks, purpose, specifications (metadata) and registry governance models (with emphasis on cost effectiveness).

A number of EU, EFTA and accession countries will be analysed according to different governance of registries, regional, national and supranational registries