JMIR Publications

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 SwissPedHealth initiative. Since Sep 2022, SwissPedHealth develops and pilots 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 around 2800 patients diagnosed with cancer below the age of 20 years between 2017-2023. 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 (BioMedIT).

Results:

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.

Conclusions:

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.