In short
Belgium joined the 1+ Million Genomes (1+MG) initiative in 2020 by signing the declaration “Towards access to at least 1 million sequenced genomes in the EU by 2022” and with this became the 23rd European signatory country of the initiative. In order to facilitate the execution of the recommendations outlined by the 1+MG initiative, they have suggested the creation of a National Mirror Group (NMG) in each country. Each country gathers experts and representatives from all sectors directly related with the initiative to coordinate the national efforts towards implementing the 1+MG objectives and disseminating information between the experts working at the national and European level. In Belgium, it was agreed that the coordination of the initiative would be a joint action between Health and Research and the secretariat of the process would be managed by Sciensano. Marc Van den Bulcke (Sciensano) covers Health aspects, Kathleen D’Hondt (EWI, Vl) and Sophie Peeterbroeck (SPW-EER,WAL) cover Research and Innovation.
Read more about the 1+MG initiative
Read more about the Beyond 1 Million Genomes project
Project description
Establishing a Belgian National Mirror Group to the 1+MG initiative means creating a consultation forum with advisory capacity for the implementation of the action group, aiming at adding a broader country-specific societal perspective to the work.
The 1+MG initiative, the B1MG project and the GDI project build on realising a vision for European Healthcare and have led to the establishment of the Belgian national Mirror Group.
The Vision
The 1+Million Genomes Initiative (1+MG) was launched in 2018 and creates a European data infrastructure for genomic data. It involves twenty-six European countries that have signed a declaration to implement common rules for accessing and sharing genomic and clinical data. The goal is to enable secure access to this data across Europe, promoting better research, personalised healthcare, and informed health policy decisions.
Designing and Testing
The Beyond 1 Million Genomes (B1MG) project was initiated in 2020 as support for the implementation of the 1+Million Genomes (1+MG) initiative. The project focused on developing guidelines and resources to successfully implement the 1+MG initiative. Its aim was to create blueprints and recommendations for building a federated network of genomic data. Additionally, the project developed tools to assist countries in self-assessing their readiness to integrate genomics into their healthcare systems. The project ended in October 2023.
Have a look at the 2020-2022 roadmap
A new roadmap is currently adopted for the scale-up and sustainability phase
Read the roadmap for 2023-2027
Scaling up and Sustaining
The GDI project that was launched in 2022, builds upon the progress made by the 1+Million Genomes (1+MG) working groups, the Beyond 1 Million Genomes (B1MG) project, and investments made by EU countries. Its main goal is to establish and implement the required technical infrastructure for accessing genomic data. Through this project, the aim is to bring to life the vision outlined by the 1+MG initiative.
Visit the GDI project page
Visit the GDI website
The Belgian Mirror Group Structure
To establish the Belgian National Mirror Group for the “1+M genomes” initiative (incl. the B1MG project), the workload, for which we seek support, is subdivided in 12 topics (see below). These topics broadly cover policy-support, lab-technical, clinical, population-health, ICT, ethics-legal, economics/finance. A non-exhaustive list of collaborators to actively support the initiative was established through a survey and chairs/co-chairs have been indicated for each topic.
Working groups
1. Maturity Model
Guide the implementation / Sustainability recommendations/Access to data for research (policy-support, lab-technical, clinical, population-health, ICT, ethics-legal, economics/finance).
Participants:
Hélène Antoine-Poirel, Belgian Cancer Registry, BCR, Brussels
Miikka Vikkula, Catholic University Louvain (UCLouvain) / de Duve Institute, Leuven
Roberto Salgado, GZA-ZNA Hospitals, Antwerp
2. Ethical, Legal and Societal Issues (ELSI)
Ethical, Legal, and Societal Issues (ELSI) — Minimum recommendation on ELSI and data protection (policy-support, ethics-legal)
Participants:
Romain Alderweireldt, Fondation 101 Génomes, Brussels
Pascal Borry, The Catholic University of Leuven ( KU Leuven), Leuven
Jean-Marc Van Gyseghem, University of Namur / Research Centre Information Law and Society, Namur
Wannes Van Hoof, Sciensano, Brussels
3. Clinical and phenotypic data requirements
Clinical and phenotypic data requirements / development of standards for clinical interpretation (lab-technical, clinical, population-health)*
Participants:
Valérie Benoit, Institute of Pathology and Genetics (IPG), Charleroi
François Dufrasne, Université de Mons (UMONS), Mons
Katrien Janssens, Center of Medical Genetics Antwerp, Antwerp
Bart Loeys, Antwerp University Hospital, Antwerp
Yves Sznajer, Cliniques universitaires Saint-Luc, Brussels
Miikka Vikkula, Catholic University Louvain (UCLouvain) / de Duve Institute, Leuven
Wim Wuyts, Antwerp University Hospital Department of medical genetics, Antwerp
4. Inventory of synthetic data requirements and development of standards
(lab-technical, clinical, population-health, ICT)
5. Good sequencing practice / standards
Good sequencing practice / Minimum standards on data quality and analysis plus data challenges (lab-technical, clinical, population-health, ICT)*
Participants:
François Dufrasne, Université de Mons (UMONS), Mons
Pierrick Moreau, Institute of Pathology and Genetics (IPG), Charleroi
Arvid Suls, The University of Antwerp (UAntwerp), Antwerp
Sonia Van Dooren, University Hospital Brussels (UZ Brussel), Brussels & Vrije Universiteit Brussel (VUB), Brussels
Kevin Vanneste, Sciensano, Brussels
Frederic Vauthier, Institute of Pathology and Genetics (IPG), Charleroi
Joris Vermeesch, The Catholic University of Leuven ( KU Leuven), Leuven
6. ICT
Federated secure, interoperable framework (lab-technical, clinical, population-health, ICT)
Participants:
Jos Bellens, University Hospital Brussels (UZ Brussel), Brussels
Frederik Coppens, ELIXIR, Ghent
Catharina Olsen, University Hospital Brussels (UZ Brussel), Brussels
Erika Souche, UZ Leuven, Leuven
Geert Vandeweyer, The University of Antwerp (UAntwerp), Antwerp
7. Health economics
Health economics and outcome research/ Economic models (policy-support, clinical, population-health, ethics-legal, economics/finance)*
Participants:
Pieter-Jan Stiers
8. Stakeholders
Stakeholders outreach (policy-support, lab-technical, clinical, population-health, ICT, ethics-legal, economics/finance)
Participants:
Romain Alderweireldt, Fondation 101 Génomes, Brussels
Gert Matthijs, The Catholic University of Leuven ( KU Leuven), Leuven
9. Case: Rare Diseases
Use case — Rare diseases (lab-technical, clinical, population-health, ethics-legal)*
Participants:
Romain Alderweireldt, Fondation 101 Génomes, Brussels
Karen Colaert, Vlaams agentschap Zorg en Gezondheid (ZG), Brussels
Karin Dahan, Institute of Pathology and Genetics (IPG), Charleroi
Elfride De Baere, Ghent University & Ghent University Hospital (UZ Gent), Ghent
Charlotte De Vogelaere, Sciensano, Brussels
François Dufrasne, Université de Mons (UMONS), Mons
Bart Loeys, Antwerp University Hospital, Antwerp
Frank Kooy, The University of Antwerp (UAntwerp), Antwerp
Geert Mortier, Antwerp University Hospital, Antwerp
Emile Van Schaftingen, Catholic University Louvain (UCLouvain), Leuven
Miikka Vikkula, Catholic University Louvain (UCLouvain) / de Duve Institute, Leuven
10. Case: Cancer
Use case : Cancer (lab-technical, clinical, population-health, ethics-legal)*
Participants:
Hélène Antoine-Poirel, Belgian Cancer Registry, BCR, Brussels
Vincent Brours, University of Liège, Liège
Jurgen Del Favero, Histogenex, Antwerp
Thomas Delcourt, Sciensano, Brussels
Christine Desmedt, The Catholic University of Leuven ( KU Leuven), Leuven
Barbara Dewaele, University Hospital Leuven (UZ Leuven), Leuven
Ann Gils, Stand up to Cancer (Kom op Tegen Kanker), Brussels
Olga Kholmanskikh, Federal Agency for Medicines and Health Products (FAMHP), Brussels
Brigitte Maes, Jessa Hospital, Hasselt
11. Case: Personnalised prevention/population based sequencing
Use case : Personalised prevention/population based sequencing/genetic variation, pharmacogenomics and common and complex diseases (lab-technical, clinical, population-health, ethics-legal)*
Participants:
Charlotte De Vogelaere, Sciensano, Brussels
Gokhan Ertaylan, VITO, Mol
Michel Georges, University of Liège, Liège
Lies Lahousse, Ghent University, Ghent
Csilla Sipeky, UCB, Brussels
Rosa Rademakers, VIB & University of Antwerp (UAntwerp), Antwerp
Freya Vaeyens, University Hospital Brussels (UZ Brussel), Brussels
Kristel Van Steen, University of Liège, Liège
12. Case: Covid
Use case : Covid (lab-technical, clinical, population-health, ethics-legal)*
Participants:
Lize Cuypers, University Hospital Leuven (UZ Leuven), Leuven
Thomas Delcourt, Sciensano, Brussels
François Dufrasne, Université de Mons (UMONS), Mons
Sofieke Klamer, Sciensano, Brussels
Marie Lesenfants, Sciensano, Brussels
