We propose to create the EUropean-CANadian Cancer network (EUCANCan), a federated infrastructure whose mission is to enable Personalized Medicine in Oncology by promoting the generation and sharing of harmonized genomic and phenotypic data. EUCANCan builds on work performed by members of the consortium and related projects to align and interconnect existing European and Canadian infrastructures for the analysis and management of genomic oncology data. The EUCANCan network will be composed of reference nodes in Amsterdam, Barcelona, Berlin, Heidelberg, Paris and Toronto which have established strong research and clinical programs in the field of genomic oncology. These reference nodes will work together in an interoperable fashion to provide the genomic oncology community with a uniform computing environment for the processing, harmonization and secure sharing of cancer genome and phenome data in the context of clinical research, enabling the discovery of clinically-relevant patterns of variation in the cancer genome such as biomarkers predictive of therapeutic response. The infrastructure will also provide a proving ground for federated genome analysis systems that may one day be integrated into national and regional healthcare systems. EUCANCan’s objectives are: (1) harmonise protocols for the identification and interpretation of germline and somatic variation profiles within cancer genomes; (2) generate strategies for the flow, management, storage and distribution of data within and across EUCANCan nodes; (3) define community standards for data elements, types and formats; (4) develop an open and accessible data portals for the searching and download of EUCANCan data; and (5) define an appropriate ethical and legal frame to ensure the secure sharing of protected individual genomic and phenotypic data across countries.

The Beyond 1 Million Genomes (B1MG) consortium will establish the support and coordination structure for the European 1+ Million Genomes initiative (1+MG), which is based upon the commitment of 20 European Member States and Norway that have signed the Declaration ‘Towards access to at least 1 million sequenced genomes in the EU by 2022’. Collectively, these countries have committed to establish a cross-border federated network of national genome collections associated with phenotypic data, consented for advancing health and medicine practices across Europe. Europe is uniquely placed to take on this challenge and position itself as a global leader in this field. B1MG will go ‘beyond’ the 1M genome target and ‘beyond’ the 20 signatory countries. The project will collaborate with an array of international initiatives and consult a range of stakeholders to support the creation of a pan-European genome-based health data infrastructure, encompassing data quality and exchange standards, access protocols and legal guidance. Recommendations will be translated to a B1MG maturity level model that provides concrete guidance on the steps required to implement personalised medicine, a healthcare approach that takes into account a person’s genetic make-up, at local, regional and national-scale. Personalised medicine is expected to bring significant socio-economic benefits, including more efficient national health systems. Faster and more accurate diagnosis, the development of pharmacogenomics and advancement of preventative medicine will lead to better health, quality of life of patients and increased life expectancy. This will be captured in a methodology for economic evaluation, forming the basis of future business-cases for implementation in the health sector.