The experience of the BRIDGE-Health - Platform for population-based registries: need of harmonized procedures and Methods

Health information are widely used for evidence-based policy making, planning and evaluating research and preventive actions. An integrated effort to collect, process and communicate health information is needed. Objectives of ‘Platform for population based registries’ of BRIDGE Health Project are to improve and guarantee quality of data collection by population-based registries, facilitate their implementation, sustainability and maintenance. Methods A questionnaire was submitted to Principal Investigators (PI) of population-based registers in different health areas: cardiovascular diseases, cancers, congenital hypothyroidism, rare diseases, joint prostheses-arthroplasty, organ and tissue transplants, injuries, twins; an overview of main characteristics and methods used in the different registries have been created. Results 10 PIs answered the interview: 4 registries have national coverage, regional the others; 6 perform record linkage among different sources of information (e.g. hospital discharge records, death certificates, GPs, autopsy, clinical records, diagnostic and treatment services); 7 validate events (3 on a sample only) according to international diagnostic criteria; 5 produce ECHIM indicators; 9 evaluate completeness of events/outcomes, perform external validity, consider personnel training; 10 check internal validity. Conclusions Population-based registries show methodologic similarities, even though maintaining specific disease/condition characteristics. Results enforce need of recommendations for standardization and quality control in order to provide reliable and comparable data among European countries. Key message: Population-based registries to be sustainable may use same methods in selecting areas and population under surveillance, sources of information and record linkage procedures, but recommendations for standardization and quality control are needed