Building upon the successful experience of major EU projects conducted in the field of diabetes, Task 8.2 of Bridge Health has taken advantage of the continuing EUBIROD network of registers, managed by HIRS under the direction of Tor Vergata and with the support of the University of Surrey, to make further progress and deliver results across different disease areas.

The workplan included the following:

  • Allowing the implementation of standardized definitions for different diseases into a general population-based register data dictionary

  • Producing "blueprints" as general guides to adapt and further develop a suite of open source software for data management, statistical analysis and automated delivery of health care quality indicators. The "blueprints" were designed to include a detailed plan of the development and implementation of a user friendly interface, enabling data custodians to produce local reports and transmit data towards a central location for the routine production of EU indicators (e.g. ECHI shortlist). The compliance of the whole process to privacy and data protection rules was also explored through the specification of targeted evaluation methods, made widely available to all types of data networks participating in Bridge Health.

  • Developing properly documented technical manuals, including sets of recommendations for personnel involved in data processing of population-based registers.


Methods involved the generalisation of the BIRO approach into a disease-agnostic procedure, involving the use of customisable open source software. The existing routines were re-engineered according to a modular scheme, allowing the development of novel software amenable for use in any type of population-based register.

The generalised approach was also extended to the privacy evaluation process, which further evolved towards a Privacy and Ethics Impact and Performance Assessment (PEIPA) for general use in disease registers.


The following activities were conducted in BRIDGE Health Task 8.2:

  • Development of the data dictionary and meta-registry

  • Deployment of BIRO open source system for general analysis, open source tools, manual and reports. Provision of expert advice on software development

  • Privacy performance assessment tool and report for different chronic conditions. Assessment of legal issues related to the approaches: contribution to the blueprint. Meeting on ethical and legal issues. Analysis of ethical and legal issues from the countries. Preliminary report on legal and ethical issues. Ethical and legal aspects section included in the Technical Manual


At the end of 36 months, BRIDGE Health Task 8.2 delivered the following:

  • D8.4. Blueprint of open source software for population-based disease registers (draft), based on the BIRO experience

  • D8.5 Manual of requirements and technical specifications for users/programmers (draft)

  • D8.6. Blueprint of open source software for population-based diseases registers (final), based on the BIRO experience

  • D8.7. Manual of requirements and technical specifications for users/programmers (final)

  • Technical manual chapter on ethical and legal issues