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Published August 12, 2023 | Version 1.0.0
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The Minimal Dataset for Cancer of the 1+Million Genomes Initiative

Authors/Creators

  • 1. Center for Omics Sciences, IRCCS San Raffaele Scientific Institute, Milan, Italy.
  • 2. Limerick Digital Cancer Research Center, Health Research Institute, School of Medicine, University of Limerick, Limerick, Ireland.
  • 3. Department of Clinical and Molecular Medicine, Norwegian University of Science and Technology, Trondheim, Norway._The Cancer Clinic, St. Olav's University Hospital, Trondheim, Norway._Department of Biotechnology and Nanomedicine, SINTEF Industry, Trondheim, Norway
  • 4. Department of Molecular Genetics and the National Tumour Biology Laboratory, National Institute of Oncology, Budapest, Hungary._Department of Oncology Biobank, National Institute of Oncology, Budapest, Hungary._Hereditary Tumours Research Group, Hungarian Academy of Sciences, Semmelweis University, Budapest, Hungary.
  • 5. Department of Oncology, Oslo University Hospital, Oslo, Norway.
  • 6. Central European Institute of Technology (CEITEC), Masaryk University, Brno, Czech Republic._Department of Internal Medicine - Hematology and Oncology, Faculty of Medicine, Masaryk University and University Hospital, Brno, Czech Republic._Department of Medical Genetics and Genomics, University Hospital and Faculty of Medicine, Brno, Czech Republic.
  • 7. Department of Clinical Genetics, Pathology and Molecular Diagnostics, Office for Medical Services, Region Skåne, Lund, Sweden._Division of Pathology, Department of Clinical Sciences, Lund University, Lund, Sweden.
  • 8. Department of Oncology, Copenhagen University Hospital - Rigshospitalet, Copenhagen, Denmark.
  • 9. Bioinformatics Unit, Spanish National Cancer Research Centre (CNIO), Madrid, Spain.
  • 10. Institución Catalana de Investigación y Estudios Avanzados (ICREA), Barcelona, Spain
  • 11. Section of Cancer Genomics Haukeland University Hospital, Bergen, Norway.
  • 12. Center for Molecular Medicine, Oncode Institute, University Medical Center Utrecht, Utrecht, The Netherlands. _Hartwig Medical Foundation, Amsterdam, The Netherlands.
  • 13. Institución Catalana de Investigación y Estudios Avanzados (ICREA), Barcelona, Spain.
  • 14. Cancer Centre, Sciensano, Brussels, Belgium.
  • 15. Department of Molecular Medicine and Surgery, Karolinska Institutet, Stockholm, Sweden._Clinical Genetics, Karolinska University Hospital, Stockholm, Sweden.
  • 16. ELIXIR Hub, Wellcome Genome Campus, Hinxton, Cambridge, CB10 1SD, UK.
  • 17. Department of Pathology, Amsterdam UMC, Vrije Universiteit Amsterdam, Amsterdam, The Netherlands.
  • 18. IRCCS San Raffaele Scientific Institute, Center for Omics Sciences, Milan, Italy
  • 19. Dipartimento di Medicina e Chirurgia Traslazionale, Università Cattolica del Sacro Cuore, Rome, Italy._Fondazione Policlinico Universitario 'A. Gemelli' - Istituto di Ricovero e Cura a Carattere Scientifico (IRCCS), Rome, Italy.
  • 20. Center for Omics Sciences, IRCCS San Raffaele Scientific Institute, Milan, Italy._Functional Genomics of Cancer Unit, Division of Experimental Oncology, IRCCS San Raffaele Scientific Institute, Milan, Italy._Vita-Salute San Raffaele University, Milan, Italy.

Description

For a real impact on healthcare, precision cancer medicine requires accessibility and interoperability of clinical and genomic data across centres and countries. Due to the   heterogeneous digitization in Europe and worldwide, the definition of models for standardised data collection and usability becomes mandatory if countries want to work together on this mission. The European Union 1+Million Genomes (1+MG) initiative, supported by the Horizon 2020 Beyond 1 Million Genome project, aims at outlining data models, guidance, best practices, and technical infrastructures for transnational access to sequenced genomes, including cancer genomes. Within the framework of the cancer-focused Working Group 9 (WP9), we developed the 1+MG-Minimal Dataset for Cancer (1+MG-MDC)–a data model encompassing 138 items and organized in eight conceptual domains, for the collection of cancer-related clinical information and genomics metadata. The 1+MG-MDC, which is the result of a multidisciplinary effort, leverages pre-existing models and emphasizes the annotation and traceability of multiple aspects relevant to the complex longitudinal path of the cancer disease and its treatment. We strived to make 1+MG-MDC easy to adopt and to be filled in, and yet comprehensive, addressing the needs of both clinicians and researchers. It will be periodically revisited and updated by the 1+MG WG9 to ensure it remains fit for purpose. We propose it as a model to create homogeneous databases, which would, in turn, guide discussions on clinical and genomic features with prognostic or therapeutic value and foster real-world data research.

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