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Newsletter 9 - November 2015

PARENT Joint Action Final Event

"Patient Registries in a Digital Europe"

22nd and 23rd October 2015

Valencia, Spain

  • The tools developed facilitate the availability of better registries and enhance the joint work of experts and researchers, for an improvement of healthcare in the European scope.
  • The European Registry of registries (RoR) created by PARENT JA allows browsing and knowing the registries existing in each European country and in every health area.
  • The Guidelines for Efficient and Rationale Governance of Patient Registries will helps the setting up of registries, quality improvement and proficient governance.

The PARENT JA started in May 2012 and concluded in November 2015 with the Final Event, "Patient Registries in a Digital Europe"

The PARENT Joint Action (Cross-border Patient Registries Initiative) concluded formally with a final event held at the Higher Centre for Public Health Research of Valencia, Spain, on the 22nd and 23rd of October.

Representatives from European Member States, the European Commission, and the partners and stakeholders of the Joint Action participated in this final event, in which the deliverables developed during the project, results and conclusions of its trajectory were presented, accompanied with discussions on the future prospects and sustainability of PARENT's output.

The emphasis of the meeting was placed on the role of patient registries in public health planning and research. Thus, related topics were discussed, such as the role of patient registries in planning public health policies and their implementation in the pharmaceutical and medical devices fields.

The objective of the PARENT JA has been to support the European Member States in the setting, development and governance of patient registries in areas of major importance, e. g. as chronic diseases or medical devices among others.

The importance of the PARENT JA relies on the development of tools of significant utility, not only for those involved in the day to day work in patient registries, but also for those trying to create a new one. It will also improve transparency and research with the creation of the European Registry of registries (RoR), a novel initiative that allows any individual to consult and know the registries existing in every European country and in every health area.

The Joint Action has also developed a Methodological Guidelines for the Efficient and Rationale Governance of Patient Registries, which includes a set of recommendations to support the EU Member States in the development of procedures and improvement to be applied within local and national patient registries. This has been complemented with a Wiki-tool for self-assessment of patient registries.

The policy action proposal of the PARENT JA, for inclusion of the patient registries perspective in eHealth strategic planning, is taking steps in the context of rare diseases and European Reference Networks.

Collaboration with other institutions began through the policy activities of the PARENT JA, and the EUnetHTA JA2 will continue piloting the PARENT JA tools in the forthcoming EUnetHTA3.

Providing objective, transparent, comparable and transferable information on the short and long term efficacy of e-health technologies; favouring cross-border collaboration in the use of patient registries data, or the reduction of inequalities related to treatments and quality of patients' healthcare, e. g. those suffering from rare diseases, are some of the main objectives of this Joint Action.


The audience at the event was composed of a high number of prominent European experts in patient registries, representatives of the European Commission and European health ministries, as well as health technology developers, assessors and health care policy makers. All of them participated actively in the event, which comprised four sessions.

Though guests could attend on-site only by personal invitation from the PARENT JA Secretariat, however, almost 500 experts from all around the world were able to attend from their personal computer, as the event was broadcast live via video streaming.

See agenda




The responsible of the PARENT JA Dissemination WP, Carmen López-Briones, welcomed the audience on behalf of all the people that have collaborated to accomplish the objectives of the PARENT JA, and especially on behalf of the Associated Partners, which are the Slovenian, Croatian, Finnish, Greek and Spanish teams. Then, she introduced the authorities from Spain, Slovenia and the EC.

In his welcome speech, the Director General for Research, Innovation, Technology and Quality in the Valencian Ministry of Health, who is also the leader of the PARENT JA WP2, Dr. Oscar Zurriaga, spoke about the need for the availability of good data to improve public health. He pointed out that patient registries can be essential tools for understanding variations in medical treatments and outcomes.

Following, the Director Deputy of the Slovenian National Institute of Public Health, Dr. Ada Hocevar Grom, intervened representing her institution. This institute has coordinated the Joint Action from its beginning, with Dr. Matic Meglic as the former coordinator, to the conclusion, with Mrs. Marija Magajne, who took over coordination on September 2014.

The EC represented

The PARENT JA has been possible thanks not only to the funding of the European Commission, but also to the support received from some important members of such Institution. In the event, we were honoured by the presence and participation of the Head of E-Health and Health Technologies Assessment Unit of DG Santé of the European Commission, Dr. Tapani Piha, who spoke about the importance of patient registries.


Presentation of the PARENT JA deliverables

The PARENT JA deliverables were then introduced, beginning with the Methodological Guidelines for Efficient and Rationale Governance of Patient Registries, which included a Wiki demo. Secondly, the European Registry of registries (RoR) and the Assessment tool for patient registries self-evaluation were shown. And finally, Policy Proposals for future improvement and enhanced utilization of patient registries in Europe were presented. The presentations were followed by the Associated Projects Group feedback on the results of the work performed by the PARENT JA teams.

Following, an overview of the project's trajectory, "From the Initial Idea to the Final Event and way forward" was presented by the former coordinator of the PARENT JA, Dr. Meglic, and an open discussion concluded the session.


"The role of patient registries in public health policy planning"

In the afternoon, the role of patient registries in public health policy was discussed by two panels: I) medicinal products and II) medical devices. The panels brought together representatives of key stakeholder groups involved both on the EU and on the national level –regulatory authorities, insurers, HTA agencies, researchers and industry associations. Participating experts underlined in their presentations and in their dialogue with the audience, the significance of patient registries and their potential in supporting research, innovation and quality improvement.


On Friday, two round tables were organized to discuss particularly important issues related to the PARENT JA objectives, the future use and development of the JA deliverables and the collaboration of stakeholder institutions. Both topics were discussed and very interesting viewpoints were collected from the experts participating in them.


Round table "Building the EU electronic infrastructure for health data"

The first round table addressed patient registries as part of the EU electronic infrastructure for health data. The participants discussed the importance of all interoperability levels while building the EU health information infrastructure, and the role of methodological guidelines for patient registries supported by eHealth assets - RoR meta-registry and the Assessment Tools Moreover, future prospects and next steps were outlined through the work collaboratively accomplished by PARENT JA, EXPAND and EUCERD JA on eHealth Strategies and Roadmaps supporting European Reference Networks and rare diseases.


Round table "Sustainable patient registry cross-border collaboration"

The theme of patient registries and rare diseases was explored in more depth during the second round table, in the context of the developing EU infrastructure in this area. Cross-border collaboration engaging policy makers, researchers, EU and national authorities and patient organizations is deemed valuable. The speakers and the audience addressed topics critical to the sustainability of this effort, such as classifications, data protection, quality standards and development of relevant services.

Mrs. Marija Magajne, the current coordinator of the Joint Action, in the conclusions and remarks emphasized that the PARENT JA has fulfilled the expectations set at the beginning. The deliverables, which were welcomed and acknowledged by the participants, represent clear added value to the area of patient registries.

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Partner Member States
Croatia Croatian Institute of Public Health Slovenia National Institute of Public Health of the Republic of Slovenia (NIJZ)
Ministry of Health
Finland National Institute for Health and Welfare Malta Ministry of Health
Hungary National Institute for Quality- and Organizational Development in Healthcare and Medicines Spain Center for Public Health Research / Public Health Regional Authority
Italy Ministry of Health Portugal Direcção-Geral da Saúde
Slovakia Národné centrum zdravotníckych informácií Greece National and Kapodistrian University of Athens (NKUA)