Project benefits for the European Community

Considering that most of the European Union (EU) Member States (MS) are involved in the PARENT JA, we foresee several benefits for the EU community.


Improved foundations for more efficient and higher quality EU-wide and national/regional Health Technology Assessment (HTA) resulting from interoperable registry data, reduced cost of managing and using these data and improved scope of data available for analyses (due to improved ability to access and exchange the data in a cross-border setting) 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 (Electronic Health Records - EHRs) on the national and EU levels, through enhanced synergies with registries, as well as proposed alignment of relevant policy actions.

Sustainable reduction of resource usage for patient registries governance and operative activities on all levels (cost-efficient governance of registries).

Improved foundations for clinical and therapeutic research and development, especially in situations where population size has been a methodological or cost issue (for example, in particular population domains, such as patients with chronic diseases).

Improvement in the quality of the EU-wide health indicators (geographical comparability, time comparability, clarity, coherence) due to methodological alignment and standardized governance processes.

Special consideration is given to health information security based on existing although not widely used standards. Data in health registries are very sensitive and their abuse should be mitigated at all cost.

New potential for development of public health doctrine and cross-border public health collaboration, currently hampered by fragmentation of methodologies and analytical processes.

Reduction of inequalities in treatment or quality of care of patients with rare diseases (due to improved cross-border comparisons).

Improvement of secondary registry data will help patients make an informed choice when seeking health care in other Member States.

Consolidation of foundation for health care market (improved transparency and comparability of outcomes of health care services and comparison of particular country needs).