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Cross-Border Patient Registries Initiative [PARENT] [20112302] - Joint Actions
General objectives

The overall objective is to support member states in developing comparable and coherent patient registries in fields of identified importance (e.g. chronic diseases, rare diseases, medical technology) with the aim to rationalize and harmonize the development and governance of patient registries, thus enabling analyses of secondary data for public health and research purposes. (Please find the entire text in the accompanying Word document, Annex 1b).

Strategic relevance and contribution to the public health programme

PARENT is a response to an explicit request by EC and MS for bringing considerable added value in tackling major health challenges more effectively, through information sharing and exchange of expertise and best practice. It will bring added value to the existing knowledge of registries` development and will enhance its use. The activities in the JA are of practical value to JA partners. PARENT activities will include innovative aspects and will not duplicate existing initiatives: we will collaborate with EUnetHTA Joint Action, epSOS, eHGI/Sehgovia and others.
The project supports the second programme of community action in the field of health by contributing guidelines and best practices to MS on how to approach objective Nr. 3 (as set in article 2.2 of the Programme Decision), namely generating and disseminating health information and knowledge. Within this objective the JA directly addresses area 3.3.1.4. Cross-border e-Health instruments as supporting tools for medical information and research.
PARENT also indirectly supports the reduction of health inequalities.

Methods and means

The state-of-play in the field of registries` development in the EU will be established. An analysis of the current practices , as well as existing challenges and needs for development will be conducted using a variety of methods such as: literature review, stakeholder surveys, specifically prepared questionnaires to register holders, review of existing transnational register initiatives etc.. Areas of key importance will be identified and guidelines for the (Guidelines and Recommendations) Toolkit will be prepared. Workshops will be used to develop, review and harmonize a toolkit on development of patients` registries. Policy issues relevant to the role of eHealth enabled registers as supportive mechanisms to the implementation of the CBHC Directive requirements will be explored. Moreover, proposals for future actions and for ensuring the sustainability of collaboration on cross-border register data use will be developed and disseminated to pertinent stakeholders. (Please find the entire text in the accompanying Word document, Annex 1b).

Expected outcomes period

Direct outcomes:
-Improved foundations for more efficient and higher quality EU-wide and national/regional Health Technology Assessment due to harmonization of secondary registry data, reduced cost of managing and using this data and improved scope of data available for analyzes (due to cross-border exchange/accessibility of the data) and indicators.
-Improved cost-efficiency of the HTA business case for rare diseases and clinical fields with very small disease incidence where the cost of HTA has been a drawback to implementation - all due to reduced cost of quality data and higher volume of the data
- Enabled augmentation and expansion of benefits accrued by eHealth tools implementation on national and EU-level, through enhanced synergies with registries, as well as proposed alignment of relevant policy actions.
There are also several indirect outcomes, e.g. sustainable reduction of resource usage for patient registries governance and operative activities on all levels, EU wide health indicators quality improvement, improved foundations for clinical and therapeutic research.

Details
Start date: 01/05/2012
End date: 01/12/2015
Duration: 43 month(s)
Current status: Finalised
Programme title: Second Programme of Community action in the Field of Health 2008-2013
EC Contribution: € 2 016 231,00