The report presents a process-oriented metadata model intended to replace the current EGA v1 model over time. The proposed EGA v2 model is designed to support FAIR data, linked-data interoperability, and more consistent validation of metadata across human omics use cases. A key goal is to provide better support for a broader range of life science data types, so that metadata can be described more consistently across areas such as genomics, proteomics, microarray studies, and microbiome research.

Contributors listed on the Zenodo record include project members from the Swedish node, including Wolmar Nyberg Åkerström and Markus Englund from NBIS and FEGA Sweden.

The technical report is openly available on Zenodo: https://doi.org/10.5281/zenodo.18802072

The Zenodo record also links to the GitHub repository for the schema work: https://github.com/M-casado/fega-metadata-schema

With additional data access requests already under review, we look forward to contributing further to enabling reuse of sensitive human research data through FEGA Sweden.

With contributions now from both Uppsala University and Lund University, we have a concrete, reusable example of how Swedish universities can make controlled-access human data available in a secure and compliant way.

Based on these experiences, FEGA Sweden is continuing work to onboard additional universities, with the goal of offering a clear and well-defined path from local data management to long-term deposition and controlled access via FEGA Sweden.

The aim of this initiative is to increase the visibility of data published through FEGA Sweden and to contribute to a more integrated national research data ecosystem. By publishing metadata on Researchdata.se, we make it easier for researchers, infrastructure providers, and other stakeholders to discover and potentially reuse data hosted in our repository.

We see this as an important step in strengthening Sweden’s data infrastructure for life sciences and in supporting the FAIR principles — Findable, Accessible, Interoperable, and Reusable.

For more information about the datasets available through FEGA Sweden, please visit our datasets page or search directly at Researchdata.se.

In addition to being searchable via Researchdata.se, datasets deposited in FEGA Sweden will of course continue to be findable through the European Genome-phenome Archive (EGA) website. This ensures that the metadata remains accessible both through the national Swedish portal and the broader European infrastructure for secure data sharing in life sciences.

We are grateful for the collaboration with the dedicated team at Research Data Support at Uppsala University. Their efforts have been instrumental in streamlining the submission process, ensuring a more efficient and seamless experience for researchers who want to deposit data in FEGA Sweden.

We hope that the new procedures developed through this collaboration can serve as a model for those we aim to establish with other Swedish universities. This step represents a significant milestone in our commitment to support Swedish life science and improve the services we provide to researchers.

If you have any questions regarding our ongoing collaboration with Research Data Support at Uppsala University or with other Swedish universities, please contact the FEGA Sweden Helpdesk.

The datasets can be found through the European Genome-phenome Archive (EGA) website (see link below). Researchers can submit access requests for the deposited data, and these requests will be handled by Research Data Support at Uppsala University.

SweGen is a national initiative aimed at mapping the genetic variation in Sweden. By adding these datasets to FEGA Sweden, the SweGen data becomes more easily discoverable and accessible, significantly enhancing the availability of population-specific genomic data. The inclusion of VCF files makes it more convenient for researchers to explore the genetic variation in the WGS data, advancing research in population genetics, genomics, and precision medicine.

Aggregated variant frequency information for the SweGen cohort is also available from the SweFreq resource. SweFreq serves as a tool for both research and clinical genetics by offering insight into the allele frequencies within the Swedish population.

People working with FEGA Sweden have coauthored the paper, contributing to its vision of enabling responsible and efficient data sharing across borders.

Read the full paper at https://www.nature.com/articles/s41588-025-02101-9

If you have any questions regarding the agreement, feel free to contact the FEGA Sweden Helpdesk.

In the meantime, we have decided to proceed with depositing data from the SweGen study (see reference below). We will be collaborating closely with staff at Uppsala University to ensure this data is handled efficiently and effectively. Through this collaboration, we aim to develop procedures that we hope will also benefit other universities.

If you have any questions or would like to get in contact with us, please write to the FEGA Sweden Helpdesk.

Learn more about the SweGen study:

Ameur, A., Dahlberg, J., Olason, P. et al. SweGen: a whole-genome data resource of genetic variability in a cross-section of the Swedish population. Eur J Hum Genet 25, 1253–1260 (2017). https://doi.org/10.1038/ejhg.2017.130

If you have any questions, please write to the FEGA Sweden Helpdesk.

If you have any questions, please write to the FEGA Sweden Helpdesk.

The focus of the coming weeks will be on completing the first submission pilot with real data.

The two data processing agreements with Sunet can be accessed from the GDPR compliance web page.

You are welcome to contact the FEGA Sweden Helpdesk if you have any questions regarding the agreements.

The agreement (in Swedish) can be accessed from the GDPR compliance web page. You are welcome to contact the FEGA Sweden Helpdesk if you have any questions regarding the agreement.

Next we will finalize the work with two submission pilots. After that we will take on submissions placed on our waiting list. Stay tuned for more updates!