Improving Registration and Dataflows Between Pediatric Oncology Clinics and the Childhood Cancer Registry of Switzerland: Protocol for SwissPedCancer Quality Assurance Study

Abstract

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.

Keywords: Europe; cancer diagnosis; cancer registration; case ascertainment; chemotherapy; data quality; radiotherapy.

Figure 1.. Dataflows within SwissPedCancer (steps 1‐5) and the ongoing process of cancer registration (steps I-III). *Merge the CDWs and ChCR datasets in the NP2 B-space of BioMedIT with the subject pseudoidentifier of the CDWs and the study ID of the ChCR: In the first stage, only ChCR employees have permission to access the SwissPedCancer B-space to erase those not eligible. Not eligible are non-Swiss residents, those who gave a veto against cancer registration, and those patients who initially had a suspicion of cancer but in whom cancer was excluded later. In the second stage, the SwissPedCancer research team can access the SwissPedCancer B-space. The dataset is now ready to assess quality assurance. **Administrative data: names, sex, date of birth, and Swiss personal social security insurance number (OASI number). In green color, ongoing process of registration at the Childhood Cancer Registry of Switzerland: data transfer from pediatric oncology clinics to ChCR. In blue color, SwissPedCancer processes: automated transfers from CDWs of hospitals to ChCR. BioMedIT: Biomedical Information Technology; CRA: Cancer Registration Act; CRO: Cancer Registration Ordinance.