Data access

The LIFESTYLE Atlas collected highly sensitive and personally identifiable data, and the informed consent for the TirolGESUND study ensured protection of such data. To protect participant confidentiality, only fully anonymised datasets can be openly shared under the European Union General Data Protection Law. Sharing of linked data that may be potentially identifiable due to a high number of indirect identifiers, or otherwise sensitive data (e.g., epigenetic data), is only possible for researchers in EU countries that follow EU General Data Protection Regulation (GDPR) or in countries the European Commission has recognised the adequacy of data protection policy, following signature of a data access agreement. The data access agreement ensures protection of sensitive data. Sharing of full data sets with countries outside of GDPR-compliant or -adequate countries is pending a legal framework, however these countries will be able to request aggregate data.

Practical procedures for access

Data are under embargo until initial publication of primary and secondary study outcomes. Thereafter, individual anonymised datasets will be freely available on Zenodo under a CC-BY-SA licence. For linked data or sensitive data, eligible researchers will be able to contact the key point of contact, as noted for each dataset on Zenodo or the European Genome-Phenome Archive, respectively, to request access. A data access committee consisting of key members of the study investigator team will determine the data protection considerations for data sharing. The data access agreement, to be signed by the requesting party, will put into place a legal framework for ensuring data protection of sensitive data.