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April 2, 2026JAMIA OpenOpen Access

Follow the data: tracking data quality and completeness in oncology real-world data

Samantha J App Anne-Marie Meyer Shannon Silkensen Cody Hudson Inez Inman R Hannes Niedner Murat Sincan Muhammad Shaalan Beg Ümit Topaloĝlu

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Key Points

This study aims to evaluate how genomic data and biomarker information are transformed in cancer research data sources.
Manually reviewed health records of 30 lung cancer patients.
Assessed data transformation into the Cancer Registry and FHIR standard.
Identified information-loss or misrepresentation during the data processing.
Found varying levels of data completeness and quality among the sources reviewed.
Observed specific instances of information loss related to biomarker data.
Highlighted the need for improved standards in data representation across oncology databases.

Implication

Study reviews biomarker data quality in lung cancer patients, suggesting key areas for improvement.

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Cite This Study

App et al. (2026) studied this question.

synapsesocial.com/papers/69fd7f25bfa21ec5bbf0788c https://doi.org/10.1093/jamiaopen/ooag052

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