Fostering exchange of genomic data between european countries for clinical and research purposes: the genomic data infrastructure (gdi) project
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1
Università Cattolica del Sacro Cuore Italy
2
Scuola Superiore S. Anna Pisa Italy
3
Istituto Gianna Gaslini IRCCS Italy
Publication date: 2023-04-26
Popul. Med. 2023;5(Supplement):A607
ABSTRACT
Background and Objectives:
Since 2018, 24 EU countries, the UK, and Norway joined the One+ Million Genomes initiative (1+MG) to step up efforts towards creating a European data infrastructure for genomic data and implementing common national rules enabling federated data access. The goal is to ensure appropriate technical infrastructure is available to allow for secure, federated, and ethically sound access to genomic data. In the first phase, the “Beyond 1 Million Genomes” (B1MG) project dealt with infrastructure set-up, legal and technical guidance, data standards, and best practices to enable data access.
Methods:
The Genomic Data Infrastructure (GDI) project was launched in November 2022 to start the scale-up and sustainability phase of the 1+MG initiative. It includes 44 partners from 20 countries, divided into 8 Work Packages across three pillars (Long-term sustainability, 1+MG infrastructure, and Application and innovation solution).
Results:
Over 4 years, the GDI project will establish a federated data infrastructure across Europe for genomic and clinical data. It will also design and implement a communication strategy to inform citizens and policymakers and ensure their trust.
Conclusion:
The GDI project will provide data access and governance to genomic and clinical data across adhering countries, integrating them and making them available for clinicians and researchers safely and sustainably.