Peer-reviewed article
From registration to insight: how STRONG AYA transforms registry data to enhance decision-support tools for adolescent and young adult oncology.
N F Hughes, J Hogenboom, R N Carter, L J Norman, V Gouthamchand et al. ·
Summary
Written by AI, not yet AICS's view · claude-haiku-4-5-20251001This paper describes a technical infrastructure project called STRONG AYA that uses federated learning to combine cancer registry data from multiple European countries to support better care for adolescents and young adults with cancer. The project develops standardized data items and patient-reported outcomes to help healthcare professionals make better decisions during patient consultations. The authors demonstrate how registry data from a UK cancer register can be integrated into privacy-preserving analytics and displayed in electronic health records.
Key points
- STRONG AYA is an international consortium using federated learning to analyze cancer registry data across multiple countries
- A Core Outcome Set was developed to measure clinically important outcomes and patient-reported outcomes for adolescents and young adults with cancer
- Data from the Yorkshire Specialist Register of Cancer in Children and Young People was successfully integrated into the STRONG AYA infrastructure
- Results can be viewed by healthcare professionals to support patient consultations and comparisons to aggregate analyses
- The project aims to improve outcomes for adolescents and young adults with cancer through better data infrastructure
Limitations
This is a proof-of-concept infrastructure paper focused on technical implementation rather than evaluating actual health outcomes or the effectiveness of the system in improving patient care. The document does not provide evidence of whether using these decision-support tools actually leads to better clinical outcomes for adolescents and young adults with cancer.
Abstract
BACKGROUND: 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. METHODS: 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. RESULTS: 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. CONCLUSION: 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.