From registration to insight: how STRONG AYA transforms registry data to enhance decision-support tools for adolescent and young adult oncology.

Authors

N F Hughes, J Hogenboom, R N Carter, L J Norman, V Gouthamchand, O C Lindner, E Connearn, A Lobo Gomes, A Sikora-Koperska, M Rosińska, K Pogoda, P Wiechno, P Jagodzińska-Mucha, I Ługowska, S Hanebaum, A L A J Dekker, W T A van der Graaf, O Husson, L Y L Wee, R G Feltbower, D P Stark

Published in

ESMO real world data and digital oncology. Volume 14. Pages 100764. Epub Sep 15, 2026.

Abstract

Population-based cancer registries (PBCR) are important for monitoring trends in cancer epidemiology, facilitating the implementation of effective cancer services. Adolescents and young adults (AYAs) with cancer are a group of patients with a unique set of needs. The utility of PBCR in AYAs is limited by the lack of AYA-specific data items. STRONG AYA, an international multidisciplinary consortium, is addressing this through federated learning (FL) methodology and novel data visualisation concepts. A Core Outcome Set has been developed to measure outcomes of importance through clinical data and patient-reported outcomes (PROs). We describe how data from the Yorkshire Specialist Register of Cancer in Children and Young People (YSRCCYP), a PBCR in the UK, is being used within the STRONG AYA and how the subsequent analyses can guide patient consultation through a proof of concept.
Data from the YSRCCYP were imported into an open-source privacy-enhancing FL infrastructure, from which FL analyses are carried out along with data provided by other consortium members. The results are extracted into the PROMPT software (in-house software developed by the University of Leeds and Leeds Teaching Hospitals NHS Trust) and integrated into patient electronic health care records.
Health care professionals can view the results of individual PROs at various time points and in comparison to summary analyses carried out within the STRONG AYA infrastructure.
We have demonstrated how a regional PBCR can contribute to a cross-European infrastructure and analyses viewed to enhance patient consultations. Such analyses have the potential to be used for research and policy-making, improving outcomes for AYAs.

PMID:
42774774
Bibliographic data and abstract were imported from PubMed on 23 Sep 2026.

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