Two project achievements this week: Full Infrastructure Connectivity and Largest Dataset Integration to Date

August 14, 2025

Two project achievements this week: Full Infrastructure Connectivity and Largest Dataset Integration to Date

This week, the STRONG-AYA consortium celebrates two important steps, marking great progress in both the technical development of our pan-European federated data infrastructure and growth of the adolescent and young adult (AYA) cancer patient datasets that are ready for analysis.

Firstly, the Italian node at IRCCS Istituto Nazionale dei Tumori di Milano is now successfully connected to the STRONG-AYA federated infrastructure. With this addition, all data nodes across the five participating countries – the United Kingdom, the Netherlands, France, Poland, and Italy – are now live. This means that all seven participating centres are technically ready to input data for collaborative analysis. This connectivity is a crucial step towards enabling secure, cross-border research of multiple cancer datasets.

Secondly, the teams at Maastricht University and the University of Leeds have successfully converted and integrated a large retrospective dataset from the Yorkshire Specialist Register of Cancer in Children and Young People (YSRCCYP) in the STRONG-AYA federated infrastructure. This dataset contains information on more than 9,000 AYA cancer patients, with records dating back to 1982. It is the largest cohort made available within the STRONG-AYA consortium to date. At this stage, five of the seven centres participating in STRONG-AYA already have retrospective data securely stored and converted within their nodes for analysis.

Retrospective datasets in STRONG-AYA come from a variety of trusted sources at local, regional and national level, including medical records, clinical registries such as cancer registries and national statistics, as well as population studies and other research databases. In our federated learning model, the data never leaves its home. Instead, the analytical model is “sent” to each node, where it learns from the local data. Only the resulting insights – not the raw data – are shared back, allowing researchers to collaborate effectively with multiple datasets held in different countries, while preserving privacy and ensuring high data protection standards.

In parallel with these developments, work is already underway to prepare the integration of prospectively collected AYA cancer patient data over the coming months. With this, STRONG-AYA will bring new insights into health and care outcomes for AYA cancer patients.