First dataset goes live at the University of Manchester: Successful end-to-end STRONG-AYA federation run

July 3, 2025

First dataset goes live at the University of Manchester: Successful end-to-end STRONG-AYA federation run

The STRONG‑AYA teams at the University of Manchester and University of Maastricht have reached a major project milestone: retrospective data from more than 5,500 adolescent and young adult (AYA) cancer patients are now fully connected to the secure pan‑European STRONG-AYA infrastructure. For the first time, all data can flow seamlessly from a local centre into the STRONG‑AYA federation, enabling FAIR, privacy‑preserving data analyses across the ecosystem. Initial data analytics have already returned first results on the average patient age at initial diagnosis and the years of initial diagnosis, covering 1964 (!) – 2024. This important step demonstrates semantic interoperability of the data and that STRONG-AYA federation components work exactly together as intended. In the future, the dataset will be expanded with additional variables and patient‑reported outcome measures (PROMs).

This success reflects the strong cross‑site collaboration in the STRONG-AYA consortium. Congratulations to Martin McCabe, Kate Vaughan and Charlotte Heaven (University of Manchester) and Joshi Hogenboom, Varsha Gouthamchand, and Leonard Wee (Maastricht University) for demonstrating the full end‑to‑end workflow. This marks an important step in STRONG-AYA’s mission to create a pan-European, patient-centred research ecosystem that supports better healthcare, policy, and improved outcomes for AYAs with cancer.