Abstract
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.
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.
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.
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.