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Improving Registration and Dataflows Between Pediatric Oncology Clinics and the Childhood Cancer Registry of
Yara Shoman1,2, Lorenz Leuenberger1,3, Grit Sommer1,2
1Institute of Social and Preventive Medicine, University of Bern, Mittelstrasse 43, Bern, CH-3012, Switzerland, 41 (0)31 631 35 07.
Insights
This study introduces SwissPedCancer, aiming to automate data transfer for childhood cancer registries in Switzerland. The project will improve data accuracy and efficiency, benefiting cancer research and patient care.
Area of Science:
- Pediatric Oncology
- Cancer Registries
- Health Informatics
Background:
- Cancer registries are crucial for monitoring cancer incidence and survival, but manual data entry in Switzerland is time-consuming and error-prone.
- The Childhood Cancer Registry (ChCR) in Switzerland relies on manual data input from pediatric oncology units, lacking automated data transfers or feedback loops.
Purpose of the Study:
- To explore automated data transfer options from clinical data warehouses and establish feedback loops for efficient cancer registry processes.
- To enhance the completeness, accuracy, timeliness, and comparability of childhood cancer data in Switzerland.
Main Methods:
- SwissPedCancer, part of the Swiss Pediatric Personalized Research Network (SwissPedHealth), will compare data from pediatric oncology clinics with manually validated ChCR data.
- Data from approximately 2800 patients (2017-2023) will be analyzed for completeness, accuracy, and timeliness.
- The project will evaluate data on diagnoses, treatments, genetic factors, remission, relapse, and late effects.
Main Results:
- Data extraction is scheduled to begin in January 2026, with study results expected in summer 2026.
- The project will establish a framework for optimizing standardized data transfers between pediatric oncology clinics and the ChCR.
Conclusions:
- SwissPedCancer aims to reduce manual workload and improve childhood cancer data quality in Switzerland.
- The project will contribute to a sustainable national infrastructure for high-quality cancer registration and evidence-based decision-making.
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.
