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Final deliverables of PARENT JA

Final deliverables of PARENT JA

We are pleased to make available the final deliverables of PARENT JA.

The PARENT Joint Action has been a direct response to an explicit request by the European Commission and Member States to bring considerable added value in tackling major health challenges more effectively, through information sharing and exchange of expertise and best practice.

The aim of the PARENT Joint Action has been to provide Member States with guidelines and recommendations on improving patient registry quality and interoperability readiness, which in turn can encourage and improve the use of data for secondary purposes.

The PARENT JA has succeeded in producing a mapping of the EU/MS general and cross-border patient registry scenery, which together with the work accomplished earlier in the field of rare diseases gives a rather comprehensive overview of the area. Particularly the JA has contributed in shedding light on the interoperability preparedness level of EU MS patient registries and the bottlenecks to be overcome in order to integrate patient registries in the Digital European infrastructure.

Over the course of the PARENT JA, two complete versions of the Registry of Registries have been created. The first was based upon an online questionnaire, which collected metadata on European patient registries and included a complete directory with various browsing functions. Information collected from registry owners and administrators included general information, data sources, uses and needs, methodologies, availability, comparability, ownership and potential for the secondary use of registry data. The second version of the RoR expanded upon these functionalities with the addition of an informative homepage which helped in dissemination activities. The second version also included the ability for registry holders to nominate new organisations and registries as well as edit their data, with links to the Registry Guidelines wiki tool. This version also allows registered users to access a dynamic assessment and comparison tool. The tool is accessible at http://www.parent-ror.eu/#/registries

The Methodological Guidelines and Recommendations for Efficient and Rational Governance of Patient Registries enables the registry holders, governance bodies, financing institutions, researchers and others a comprehensive overview on necessary activities and structures to govern the registries, to provide the high quality data and to re-use the data. A wiki tool was created, as a means of offering the Guidelines to the users in a searchable and structured way.

In their document, Initiative for Patient Registries - Strategy and Pilot Phase, the European Medicine Agency (EMA) recognised the PARENT JA RoR and the Guidelines as important sources of information for identification and evaluation of existing data sources.

The PARENT JA outlined clear policy objectives: (1) Proposing the strengthening of use, usefulness and suitability of registries for HTA-based patient and consumer safety promotion and monitoring, (2) Proposing the placement of interoperable patient registries on the national and EU eHealth strategies and roadmaps, (3) Proposing support for ERNs and rare disease services and research, such as National Contact Points for the support of patient registry collaboration.

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