8 February 2022

Irene Schlünder, Legal Expert at BBMRI-ERIC, participates in a panel discussion at the 6th European Conference on Clinical Research “Clinical Trials in a New Era”, organized by the European CRO Federation in Madrid, Spain (hybrid format, partially online) The conference focuses on evolution of clinical research after the Covid-19 pandemic, the main changes in the new era, the new opportunities and challenges to overcome.

A session of the conference is dedicated to breaking news for clinical research, in particular on “GDPR Code of Conduct: Good Data Processing. Practice for Service Providers in Clinical Research”: the session explores the different codes of conduct elaborated on so far, which aim for harmonization of GDPR rules in Europe. Yoani Matsakis, from Telemedicine Technologies, EUCROF, France, together with Kate Smirnova, from PSI CRO AG, Switzerland present the EUCROF code and have a dialogue with different experts that focus on complementarity among different codes and the benefits of this instrument for connecting the patients, biobanks and researchers.

Among the experts there will be Irene Schlünder from BBMRI-ERIC, Dimitrios Athanasiou from EURORDIS and the European Patient Forum Greece; Brendan Barnes from EFPIA, and Vivienne van de Walle from SCRS.

Further details here and programme here.

9 December 2021

Michaela Th. Mayrhofer, Head of ELSI Services & Research (BBMRI-ERIC) participates in a panel discussion at the GDPR SUMMIT 2021 by MyData-TRUST on “Healthcare Research and its Codes of Conducts: Where do we stand?”.

The goal of MyData-TRUST is to create events about Data Protection, exclusively dedicated to Clinical Professionals, people who work with Health Data. All panelists from EU Cloud and EUCROF stress the potential of codes of conduct as support tools and the importance of collaborating with each other and external parties (eg. EFPIA) in order to ensure that the respective codes in development are complementary to each other.

2 November 2021

Register for Europe Biobank Week: Session on Regulatory Implications, 9 November 2021 – 2:15 pm – 3:30 pm

Michaela Mayrhofer, Head of ELSI Services & Research (BBMRI-ERIC) will give a presentation: “Where are we on the Code of Conduct for Health Research?” at Europe Biobank Week 2021. Registration is required. Recordings will be available to registered participants only. Register here:

1 September 2021

The European Union is currently focusing on the creation of a European Data Space, which is one of the priorities of the Commission 2019-2025, including the health sector.

Such European Health Data Space aims at promoting better exchange and access to health data for healthcare delivery (so-called primary use of data) and for health research and health policy making purposes (so-called secondary use of data).

To learn more about the initiative see the European Health Data Space website.

14 July 2021

The EDPB has drafted “Guidelines 04/2021 on codes of conduct as tools for transfers” and welcomes comments until 1 October 2021:

9 July 2019

The European Data Protection Board adopted an opinion on the Austrian DPA’s draft decision on the Accreditation Criteria for Codes of Conduct monitoring bodies.

25 October 2018

GenomeWeb publishes an article on the Code of Conduct for Health Research: “Amid GDPR Implementation, European Efforts Drafts Code of Conduct for Sharing Health Research Data“.

6 June 2018