Background Cancer registries are essential to monitor cancer incidence and survival to provide better quality cancer data for research. In Switzerland, the pediatric oncology units within pediatric hospitals actively report cancer cases, and the coding and registration team of the Childhood Cancer Registry (ChCR) enters data manually from medical files into the registry database. There are no automated data transfers or feedback loops between the pediatric oncology clinics and the ChCR. This ongoing process is time-consuming, inefficient, and a source of potential errors. Objective SwissPedCancer aims to explore the options for automated data transfers from clinical data warehouses and feedback loops to make cancer registry processes more efficient. Methods SwissPedCancer is a nested project within the national data stream initiative, the Swiss Pediatric Personalized Research Network (SwissPedHealth). Since September 2022, SwissPedHealth has developed and piloted structures to make routine clinical data from pediatric oncology clinics available for monitoring, benchmarking, and research in an interoperable, standardized, and quality-controlled way. SwissPedCancer expects to include approximately 2800 patients diagnosed with cancer before the age of 20 years between 2017 and 2023. The pediatric oncology clinics’ data and the manually validated ChCR data will be delivered separately to a secure national computing network for health-related data (Biomedical Information Technology). We will compare these two data sources to assess completeness (case ascertainment), accuracy (validity), and timeliness of cancer registration in the ChCR. We will evaluate data on diagnosis, treatments, underlying genetic disease, remission, relapse, and late effects. SwissPedCancer will provide a framework for optimizing standardized and uniform data transfers between pediatric oncology clinics and the ChCR and for other registries within Switzerland. Results The project was funded in September 2022 and received ethics exemption in October 2023. Data extraction from participating hospitals and the ChCR is expected to commence in January 2026. Study results are anticipated to be available in summer 2026. Conclusions SwissPedCancer aims to reduce manual workload while improving the completeness, accuracy, timeliness, and comparability of childhood cancer data in Switzerland. The project will contribute to a robust, interoperable, and sustainable national infrastructure supporting high-quality cancer registration, timely analyses, and evidence-based decision-making.
Shoman et al. (Tue,) studied this question.