By Clinical Research News Staff

October 6, 2022 | Research institutes representing five western European countries—Finland, Germany, Norway, Spain, and Sweden—will become the first to join the Federated European Genome-phenome Archive (FEGA), an international distributed data network designed to share highly-sensitive human ’omics data internationally. 

Born out of a collaboration between the UK’s European Molecular Biology Laboratory-European Bioinformatics Institute (EMBL-EBI) and Spain’s Centre for Genomic Regulation, the FEGA offers findable and accessible real-world data for scientists and researchers throughout Europe and beyond.  

The network comes at a time when the discussion around data sharing continues in many biomedical, biotechnological, and clinical research spaces. Recently, an episode of Clinical Research News’ The Scope of Things podcast talked about a similar data network scaling in Europe, North America, and Asia. 

Ultimately, data networks provide access to varied datasets that help scientists understand disease etiology and presentation while opening the door to more effective therapies. It also equips healthcare professionals with a solid foundation to execute precision medicine. 

“We are entering a new era of medical research and treatment, with countries around the world launching large-scale genomics research projects to make the most out of advances in personalized medicine,” said Arcadi Navarro, Catalan Institution for Research and Advanced Studies (ICREA) research professor, Universitat Pompeu Fabra professor, and Centre for Genomic Regulation Director of the EGA team director in a press release. “This has only been possible because citizens and scientists decided to share their data and their discoveries. Easier discovery and sharing means higher quality science and a better return for the people it serves.” 

Within the FEGA, each institute will be referred to as a “node,” or designated organization that houses human genetic data for its respective jurisdiction. The network interconnects the nodes, making each repository available to approved researchers regardless of their physical location. 

Because individual nodes must abide by the data regulation laws governing their district, the Federated EGA allows for data sharing across borders while adhering to multiple national data privacy and regulation standards. As a result, researchers can design better studies and receive precise answers to research questions. 

“The EGA is like a secure search engine for genomic data, which helps approved researchers find existing data about the disease they are studying. Before the EGA, data from a research study were generated once, analyzed once, and often ‘locked away’ on the institute’s servers,” said Mallory Freeberg, EMBL-EBI EGA Coordinator.  

“The EGA makes it easy for researchers to share their data and access others’ data, in a safe and secure way,” adds Freedberg. “This means they can perform more complex analyses on even larger datasets to unlock new insights into human health and disease. The Federated EGA allows us to expand the benefits of data reuse across national borders and really increase the value and impact of the data.” 

Each designated institution brings a wealth of information and a slightly different data focus to the network. For example, the Finnish FEGA focuses on assembling sensitive real-world data stores for medical analysis and research publication. On the other hand, the German FEGA’s primary focus will be to create FAIR—findable, accessible, interoperable, and reusable—data across 21 universities and research centers.  

In Norway, the FEGA uses the Services for Sensitive Data to provide complimentary data management resources for research and academic institutions. Last, the Spanish and Swedish FEGAs will maintain a biomedical focus emphasizing genetic and phenotypic data through local and national federated infrastructures.  

All data storehouses, or nodes, will converge into one of two central EGA nodes in the UK and Spain. The FEGA hopes that scientists worldwide can leverage their access to new and valuable data by accelerating disease research, advancing the art and science of personalized medicine, and developing life-saving diagnostics, treatments, and therapies.