The Current State of Glioma Data Registries. Issue 1 (24th June 2022)

• Record Type: Journal Article
• Authors: Yearley, Alexander G; Iorgulescu, J Bryan; Chiocca, E Antonio; Peruzzi, Pier Paolo; Smith, Timothy R; Reardon, David A; Mooney, Michael A
• Is Part Of: Neuro-oncology advances. Volume 4:Issue 1(2022)
• Publication Date: 2022-06-24
• Subjects: glioma -- database -- registry -- glioblastoma -- clinical research; 616.99481
• DOI: 10.1093/noajnl/vdac099
• Languages: English
• ISSNs: 2632-2498

Abstract

Abstract: Background: The landscape of glioma research has evolved in the past 20 years to include numerous large, multi-institutional, database efforts compiling either clinical data on glioma patients, molecular data on glioma specimens, or a combination of both. While these strategies can provide a wealth of information for glioma research, obtaining information regarding data availability and access specifications can be challenging. Methods: We reviewed the literature for ongoing clinical, molecular, and combined database efforts related to glioma research to provide researchers with a curated overview of the current state of glioma database resources. Results: We identified and reviewed a total of 20 databases with data collection spanning from 1975 to 2022. Surveyed databases included both low-grade and high-grade gliomas, and data elements included over 100 clinical variables and 12 molecular data types. Select database strengths included large sample sizes and a wide variety of variables available, while limitations of some databases included complex data access requirements and a lack of glioma-specific variables. Conclusions: This review highlights current databases and registries and their potential utility in clinical and genomic glioma research. While many high-quality resources exist, the fluid nature of glioma taxonomy makes it difficult to isolate a large cohort of patients with a pathologically confirmed diagnosis. Large, well-defined, and publicly available glioma datasets have the potential to expand the reach of glioma research and drive the field forward.