STRONG AYA General Assembly Warsaw - October 2026

October 16, 2026

STRONG AYA General Assembly Warsaw – October 2026

This week, the STRONG-AYA consortium met in Warsaw, Poland, for a two-day General Assembly, hosted by project partner Maria Sklodowska-Curie National Research Institute of Oncology (MSCI).

As we have entered the last year of the project (ending in September 2027), the discussions confirmed that the consortium has moved from building the STRONG-AYA ecosystems, federated data infrastructure, and tools for collecting and using AYA-specific patient-reported outcomes, to putting them to work.

Key highlights from the meeting:

Federated infrastructure: The federated data infrastructure is up and running at all seven centres across the Netherlands, the UK, Italy, Poland and France. So far, we have collected retrospective data from almost 29,000 adolescents and young adults (AYA) with cancer, and recruited almost 1,000 patients for the collection of clinical and patient-reported outcomes data based on our Core Outcome Set (COS).
Clinical application and public info portal: Progress was reported on the proof-of-concept clinical application in Leeds and on the public info portal, which presents data from young people with cancer. The second version of he public info portal is now available and will be tested with AYAs together with our partner Youth Cancer Europe.
Ethics research: Results on research on practical tools for ethical health data access management were presented.
Policy recommendations: Recommendations for value-based AYA cancer care, built on STRONG-AYA learnings, have been developed by consortium members. More information on this and related policy and stakeholder outreach will be shared soon.

Much is happening across all of these areas, and we look forward to sharing more in the coming months. We thank Iwona Lugowska and the whole MSCI team for their warm welcome, including a tour of the hospital, research department and biobank.

We are also grateful to all partners for their energy and commitment, and especially to the members of our Patient Advisory Board from Youth Cancer Europe – Ana, Erik, and Tomaž – for joining us in Warsaw.