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