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Consensus core clinical data elements for meningiomas (v2021.1)
Farshad Nassiri1,2,3, Justin Z Wang1,2,3, Karolyn Au4
1MacFeeters Hamilton Neuro-Oncology Program, Princess Margaret Cancer Centre, University Health Network and University of Toronto, Toronto, Ontario, Canada.
The International Consortium on Meningiomas developed common data elements (CDEs) to standardize clinical data for meningioma research. This harmonization facilitates comparative analyses and data sharing for improved understanding of meningioma molecular alterations.
Area of Science:
- Neuro-oncology
- Genomics
- Clinical Data Management
Background:
- Increasing molecular analyses of meningiomas necessitate standardized clinical data collection.
- Harmonizing language across institutions is crucial for linking molecular alterations to clinical variables.
- The International Consortium on Meningiomas addresses this need for comparative and pooled analyses.
Purpose of the Study:
- To present a set of core and supplemental meningioma-specific common data elements (CDEs).
- To facilitate comparative and pooled analyses of meningioma molecular and clinical data.
- To establish a common language for neuro-oncology research.
Main Methods:
- Followed a 4-phase process: discovery, internal validation, external validation, and distribution.
- Organized CDEs into patient- and tumor-level modules.
- Defined and described 17 core (10 patient, 7 tumor) and 14 supplemental (7 patient, 7 tumor) CDEs.
Main Results:
- Developed a comprehensive set of meningioma-specific CDEs.
- 17 core CDEs and 14 supplemental CDEs were defined.
- CDEs are now publicly available for adoption.
Conclusions:
- CDEs provide a framework for data-sharing and collaborative research in neuro-oncology.
- Facilitates a common language for comparative and pooled meningioma analyses.
- Meningioma-specific CDEs are dynamic and open to international feedback for refinement.
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