Farshad Nassiri1,2,3, Justin Z Wang1,2,3, Karolyn Au4, Jill Barnholtz-Sloan5, Michael D Jenkinson6, Kate Drummond7, Yueren Zhou8, James M Snyder9, Priscilla Brastianos10, Thomas Santarius11, Suganth Suppiah1,2,3, Laila Poisson8, Francesco Gaillard12, Mark Rosenthal13, Timothy Kaufmann14, Derek S Tsang3, Kenneth Aldape15, Gelareh Zadeh1,2,3. 1. MacFeeters Hamilton Neuro-Oncology Program, Princess Margaret Cancer Centre, University Health Network and University of Toronto, Toronto, Ontario, Canada. 2. Division of Neurosurgery, Department of Surgery, University of Toronto, Toronto, Ontario, Canada. 3. Princess Margaret Cancer Centre, University Health Network, Toronto, Ontario, Canada. 4. Division of Neurosurgery, Department of Surgery, University of Alberta, Edmonton, Alberta, Canada. 5. Case Comprehensive Cancer Center, Case Western Reserve University, Cleveland, Ohio, USA. 6. Department of Neurosurgery, University of Liverpool, Liverpool, UK. 7. Department of Neurosurgery, The Royal Melbourne Hospital, Melbourne, Victoria, Australia. 8. Department of Biostatistics, Henry Ford Health System, Detroit, Michigan, USA. 9. Department of Neurology, Henry Ford Health System, Detroit, Michigan, USA. 10. Dana Farber/Harvard Cancer Center, Massachusetts General Hospital, Boston, Massachusetts, USA. 11. Department of Neurosurgery, Cambridge University Hospitals, Cambridge, UK. 12. Department of Radiology, The Royal Melbourne Hospital, Melbourne, Victoria, Australia. 13. Department of Medical Oncology, Peter MacCallum Cancer Centre, Melbourne, Victoria, Australia. 14. Department of Radiology, The Mayo Clinic, Rochester, Minnesota, USA. 15. National Cancer Institute, National Institutes of Health, Bethesda, Maryland, USA.
Abstract
BACKGROUND: With increasing molecular analyses of meningiomas, there is a need to harmonize language used to capture clinical data across centers to ensure that molecular alterations are appropriately linked to clinical variables of interest. Here the International Consortium on Meningiomas presents a set of core and supplemental meningioma-specific common data elements (CDEs) to facilitate comparative and pooled analyses. METHODS: The generation of CDEs followed the 4-phase process similar to other National Institute of Neurological Disorders and Stroke (NINDS) CDE projects: discovery, internal validation, external validation, and distribution. RESULTS: The CDEs were organized into patient- and tumor-level modules. In total, 17 core CDEs (10 patient level and 7 tumor level) as well as 14 supplemental CDEs (7 patient level and 7 tumor level) were defined and described. These CDEs are now made publicly available for dissemination and adoption. CONCLUSIONS: CDEs provide a framework for discussion in the neuro-oncology community that will facilitate data-sharing for collaborative research projects and aid in developing a common language for comparative and pooled analyses. The meningioma-specific CDEs presented here are intended to be dynamic parameters that evolve with time and The Consortium welcomes international feedback for further refinement and implementation of these CDEs.
BACKGROUND: With increasing molecular analyses of meningiomas, there is a need to harmonize language used to capture clinical data across centers to ensure that molecular alterations are appropriately linked to clinical variables of interest. Here the International Consortium on Meningiomas presents a set of core and supplemental meningioma-specific common data elements (CDEs) to facilitate comparative and pooled analyses. METHODS: The generation of CDEs followed the 4-phase process similar to other National Institute of Neurological Disorders and Stroke (NINDS) CDE projects: discovery, internal validation, external validation, and distribution. RESULTS: The CDEs were organized into patient- and tumor-level modules. In total, 17 core CDEs (10 patient level and 7 tumor level) as well as 14 supplemental CDEs (7 patient level and 7 tumor level) were defined and described. These CDEs are now made publicly available for dissemination and adoption. CONCLUSIONS: CDEs provide a framework for discussion in the neuro-oncology community that will facilitate data-sharing for collaborative research projects and aid in developing a common language for comparative and pooled analyses. The meningioma-specific CDEs presented here are intended to be dynamic parameters that evolve with time and The Consortium welcomes international feedback for further refinement and implementation of these CDEs.
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