Newsletter 3
April 2014
Workshop on "The Policy and Implementation Context for Cross-Border Patient Registries"
Brussels, 27 March 2014

Wp6_1The PARENT JA held a two-day event in Brussels on March 27th, with the participation of members from the Associated Project Group, together with Associated and Collaborating Partners, in addition to European Commission representatives (DG Sanco / EuropeanReferenceNetworks, European Social Insurers Platform, EUnetHTA Joint Action2, Health Information and Quality Authority of Ireland).

The event began with a Workshop aimed at gathering input on the “Policy and Implementation Context for Cross-Border Patient Registries”, and was followed by a meeting of the PARENT Executive Committee. The participants in the workshop presented their experiences in developing sustainable solutions implemented in their different European countries, and important discussions arose about the interim findings of the WP6 on policy analysis, European and international registries strategies and governance, as well as potential models for sustainable cross-border registry platforms.

Warm thanks to all the participants for their active contribution!

(Download Materials)

Highlights and conclusions from the meetingWp6_2

The feedback drawn from this workshop on the “Policy and Implementation Context for Cross-Border Patient Registries” will be useful for further work, as regards a forthcoming round of Stakeholders’ discussions that will culminate at a follow up PARENT meeting that will be held in June 12-13th, in Helsinki, Finland.

The main highlights and conclusions pinpointed in the meeting are as follows:

Resources such as the ones developed by PARENT are in high demand, among others by European Reference Networks, insurers’ organizations and the EU Member States. Guidance regarding to registries, management of data in general and cross-border data exchange is needed, as well as the development of tools for setting up registries (particularly in support of interoperability and data protection aspects). Read more…

Forthcoming Events

12-14 May 2014

eHealth Forum 2014, Athens, Greece

31 May - 5 June 2014

ISPOR Annual Congress

31 May - 4 June 2014

51th ERA-EDTA Congress

12-14 June 2014

Workshop on “The Policy and Implementation Context for Cross-Border Patient Registries”

30-31 October 2014

HTA 2.0 Europe Conference

Partner Member States


Croatian Institute of Public Health  


National Institute for Health and Welfare


National Institute for Quality- and Organizational Development in Healthcare and Medicines


Ministry of Health


Národné centrum zdravotníckych informácií

Partner Member States


National and Kapodistrian University of Athens (NKUA)


National Institute of Public Health of the Republic of Slovenia (NIJZ)
Ministry of Health


Ministry of Health


Center for Public Health Research / Public Health Regional Authority


The centre of Health Economics