Programme
15:00-15:10 – Welcome and introductions to AYA cancer care: the unique challenges of this population
Richard Price and Norbert Couespel, STRONG-AYA Work Package 4 leads.
Including quotes from STRONG-AYA Patient Advisory Board members
15:10-15:25 – The STRONG-AYA project
Overview of the project and of the scope of each work package.
Winette Van der Graaf, STRONG-AYA scientific coordinator.
15:25-16:15 – Break-out rooms
- STRONG-AYA Patient perspectives on data sharing and data altruism - Open discussion with cancer patient & caregiver representative organisations, cancer patients & caregivers.
Moderated by Urška Košir, STRONG-AYA Patient Advisory Board lead, and Darian Meacham, WP2 stakeholder engagement co-lead. - Improving data collection and data support infrastructures for AYAs with cancer - Open discussion with high-level AYA cancer experts.
Moderated by Anne-Sophie Darlington, STRONG-AYA WP1 lead, and Joshi Hogenboom, STRONG-AYA WP3 representative. - From data to policy change in AYA cancer care - Open discussion with policymakers, cancer advocates & relevant stakeholders.
Moderated by Richard Price and Norbert Couespel, STRONG-AYA WP4 leads.
16:15-16:30 – Common ground on discussion points from break-out rooms
Key points of each break-out room by respective moderators.
16:30-16:55 – AYA in cancer care: bringing together the community: How can STRONG-AYA contribute to the work of other relevant projects focused on AYA cancer care?
Moderated by Daniel Stark, STRONG-AYA WP4 co-lead.
- European Network for Teenagers and Young Adults with Cancer (ENTYAC): How can the STRONG-AYA project foster advancing for the AYA cancer care policy agenda across European countries?
- Joint Action on Networks of Expertise (JANE): How can the STRONG-AYA data ecosystems support the future JANE AYA Network of Expertise?
Represented by Andrea Ferrari, Istituto Nazionale dei Tumori di Milano. - EU Network of Youth Cancer Survivors (EU-CAYAS-NET): How can STRONG-AYA partner with EU-CAYAS-NET to prioritise addressing AYA cancer patient needs in research & policy?
Represented by Ana Amariutei, Youth Cancer Europe. - Joint Action Towards the European Health Data Space (TEHDAS): How can the emerging EHDS integrate other existing pan-European data infrastructure projects like STRONG-AYA?
Represented by Linda Abboud, Sciensano.
16:55-17:00 – Wrap up & next steps for the STRONG-AYA project
Winette Van der Graaf, STRONG-AYA scientific coordinator.
Speakers
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Winette van der Graaf President of the European Organisation for Research and Treatment of Cancer (EORTC) and Board Member of European Cancer Organisation.
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Daniel Stark Professor of Teenage and Young Adult Cancer Research & NHS Consultant in Cancer Medicine
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Urška Košir DPhil, Departmental Lecturer in Department of Experimental Psychology, University of Oxford
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Darian Meacham Chair of the Philosophy Department and Principal Investigator for Ethics, Maastricht University
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Anne-Sophie Darlington Professor of Child and Family Psychological Health, University of Southampton
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Joshi Hogenboom Epidemiologist & PhD-candidate in data science
Speakers
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Winette van der Graaf President of the European Organisation for Research and Treatment of Cancer (EORTC) and Board Member of European Cancer Organisation.
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Daniel Stark Professor of Teenage and Young Adult Cancer Research & NHS Consultant in Cancer Medicine
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Urška Košir DPhil, Departmental Lecturer in Department of Experimental Psychology, University of Oxford
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Darian Meacham Chair of the Philosophy Department and Principal Investigator for Ethics, Maastricht University
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Anne-Sophie Darlington Professor of Child and Family Psychological Health, University of Southampton
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Joshi Hogenboom Epidemiologist & PhD-candidate in data science
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Winette van der Graaf President of the European Organisation for Research and Treatment of Cancer (EORTC) and Board Member of European Cancer Organisation. Read Bio
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Daniel Stark Professor of Teenage and Young Adult Cancer Research & NHS Consultant in Cancer Medicine Read Bio
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Urška Košir DPhil, Departmental Lecturer in Department of Experimental Psychology, University of Oxford Read Bio
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Darian Meacham Chair of the Philosophy Department and Principal Investigator for Ethics, Maastricht University Read Bio
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Anne-Sophie Darlington Professor of Child and Family Psychological Health, University of Southampton Read Bio
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Ana Amariutei Research Manager at European Patient Advocacy Institute and Patient Advocate at Youth Cancer Europe
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Richard Price HEAD OF POLICY, EUROPEAN CANCER ORGANISATION
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Norbert Couespel SENIOR COORDINATOR, POLICY RESEARCH & EU PROJECTS, EUROPEAN CANCER ORGANISATION
Speakers
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Winette van der Graaf President of the European Organisation for Research and Treatment of Cancer (EORTC) and Board Member of European Cancer Organisation.
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Daniel Stark Professor of Teenage and Young Adult Cancer Research & NHS Consultant in Cancer Medicine
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Urška Košir DPhil, Departmental Lecturer in Department of Experimental Psychology, University of Oxford
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Darian Meacham Chair of the Philosophy Department and Principal Investigator for Ethics, Maastricht University
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Anne-Sophie Darlington Professor of Child and Family Psychological Health, University of Southampton
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Joshi Hogenboom Epidemiologist & PhD-candidate in data science
Speakers
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Winette van der Graaf President of the European Organisation for Research and Treatment of Cancer (EORTC) and Board Member of European Cancer Organisation.
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Daniel Stark Professor of Teenage and Young Adult Cancer Research & NHS Consultant in Cancer Medicine
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Urška Košir DPhil, Departmental Lecturer in Department of Experimental Psychology, University of Oxford
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Darian Meacham Chair of the Philosophy Department and Principal Investigator for Ethics, Maastricht University
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Anne-Sophie Darlington Professor of Child and Family Psychological Health, University of Southampton
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Joshi Hogenboom Epidemiologist & PhD-candidate in data science
