STRONG-AYA General Assembly in Paris

October 8, 2025

STRONG-AYA General Assembly in Paris

This week, the STRONG-AYA consortium gathered in Paris for a two-day General Assembly, hosted by project partner Institut Gustave Roussy, to share progress and plan collaboration for the next phase of activities.

Following an online General Assembly at the start of this year, meeting again in person was a great opportunity to reconnect, exchange ideas, and strengthen collaboration among partners. The discussions focused on consolidating achievements to date and identifying pathways to ensure STRONG-AYA’s long-term impact in improving outcomes for adolescents and young adults (AYAs) with cancer – also beyond the project’s duration.

Day 1 of the meeting focused on how to sustain STRONG-AYA’s results and outputs, and how to communicate them effectively to diverse audiences, including AYA cancer patients, healthcare professionals, researchers, and policy-makers. Defining our “big wins” and key messages will be an important next step for all project tasks. Another key topic was the ethical and responsible access to and processing of health data for research purposes (i.e., secondary use), and how this could be promoted through STRONG-AYA’s federated learning infrastructure. Partners also examined different models for managing patient consent in data sharing for research, and their applicability in STRONG-AYA. In addition, the consortium discussed steps for the upcoming evaluation and refinement of the STRONG-AYA Core Outcome Set. The day concluded with exchanges on how to strengthen engagement with stakeholders, particularly policy-makers, and other EU-funded AYA cancer initiatives.

Day 2 began with an interactive and creative workshop organized by our Patient Advisory Board (PAB). The workshop focused on impactful and memorable cancer awareness campaigns, challenging participants to think about how STRONG-AYA can reach AYA cancer patients and the general public more effectively. The PAB members added important perspectives and ideas throughout the General Assembly meeting, reminding us about the importance of patient co-creation and the need to translate our research insights into tangible resources. The second part of the day was dedicated to the STRONG-AYA federated learning infrastructure, including progress on algorithm development, authentication measures and security tests, and updates on the healthcare professional and public information portal. It was great to see the data currently integrated in the federated infrastructure — with retrospective data now covering more than 22,100 AYA cancer patients! The session ended with discussions on how the extensive and growing datasets (soon also including prospective data) can be leveraged and integrated in clinical practice, as well as the next steps for launching the public information portal.

Thanks to Institut Gustave Roussy for hosting us in Paris, and to all partners and PAB members for their active engagement, valuable input, and true dedication to our mission of improving AYA cancer care in Europe. We now move forward into our next phase!