Platform for population based registries

Maintain and strengthen the implementation of population based registries for chronic diseases with standardization of methodologies for producing standardized EU-wide indicators.

In Europe an extensive experience of population-based registers has been accumulated in cancer, acute myocardial infarction, stroke and diabetes through projects such as EUROCISS and EUBIROD. Collected data rarely follow standardized diagnostic criteria for the definition and validation of events, cover a population large enough to produce stable indicators, and follow methods to process routine data producing comparable indicators.

Objectives of WP8 are to gather, harmonize, and disseminate procedures/methods and best practice to improve and guarantee quality of data collection of population based registers, facilitate their implementation, sustainability and maintenance, assess comparable community health indicators of occurrence, quality of care and outcomes of chronic diseases.

Beyond the consolidation of a collaborative network of fieldwork experts involved in surveillance, a manual of operations with stepwise procedure for the implementation of population based registers including sources of information, population size, standardized diagnostic criteria, validation, elaboration of diseases occurrence, health care and outcome indicators will be set up; guidelines for training personnel involved in population based registers will be prepared including definitions, procedures for record linkage, validation, assessment of disease occurrence, health care and outcome indicators. A blue print of open source software platform for registers for data management, statistical analysis, and assess of indicators and a manual of technical specifications for users and programmers will be delivered.

The main contributors to this research field are: