GDPR activities

As almost all translational medicine data are personal data of high sensitivity, the application of and compliance with the General Data Protection Regulation (GDPR) is a central topic in ELIXIR-LU.

ELIXIR-LU is engaged in training activities around the GDPR and develops solutions for the various requirements. In this context, ELIXIR-LU is developing the open source software DAISY for a research data registry and is working on a generic data agreement wizard. Contract templates for our data hosting services and the corresponding data use agreement are already available here:

For an introduction into the GDPR and its implication for sharing of research data, have a look at the ELIXIR Webinar on the topic: Requirements in data protection law and the upcoming General Data Protection Regulation (GDPR) implementation. The slides are available here.

For a quick overview on GDPR and its impact on biomedical research, have a look at the article entitled “Biomedical research: achieving transparency under the General Data Protection Regulation”, published in the September 2018 issue of Semper, a monthly magazine distributed in Luxembourg and targeting doctors, pharmacists and healthcare professionals. The full text can be found in the online version of the magazine (p. 26 - 28).

Other presentations regarding the GDPR:

DAISY (DAta Information SYstem)

Open source software for a research data registry Within life-science research, the EU General Data Protection Regulation has a significant operational impact on organisations that use and exchange controlled-access Human Data. One key principle of the GDPR is accountability, where institutions are required to keep a record of their “data processings”. The Data Information System (DAISY) is designed to help institutions, projects or data hubs to record personal data used in biomedical research.

DAISY source code is available on GitHub.

For more information: