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. 2022 Jun 24;4(1):vdac099.
doi: 10.1093/noajnl/vdac099. eCollection 2022 Jan-Dec.

The current state of glioma data registries

Alexander G Yearley  1 , Julian Bryan Iorgulescu  2   3 , Ennio Antonio Chiocca  1 , Pier Paolo Peruzzi  1 , Timothy R Smith  1 , David A Reardon  4 , Michael A Mooney  1
Affiliations

The current state of glioma data registries

Alexander G Yearley et al. Neurooncol Adv. .

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- 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.

Keywords: clinical research; database; glioblastoma; glioma; registry.

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Figures

Figure 1.
Figure 1.
Overview of combined, clinical, and molecular databases available for glioma research. UCSC, University of California, Santa Cruz.
See this image and copyright information in PMC

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