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DISP-10. Enhancing trust and representative participation in the international low grade glioma registry
Community engagement strategies and recommendations
Salmi, L., Barnard, J., Ritger, C., Fischmann, R., Garcia-Hernandez, S., Gay, N., Gonzalez-Fisher, R., Johnson, K., Lennox, L., Lipof, G., Ostmyer, J., Perkins, I., Reno, J. E., Roth, T., Begum, A., Claus, E., Verhaak, R., & Kwan, B. W. (2023). DISP-10. Enhancing trust and representative participation in the international low grade glioma registry: Community engagement strategies and recommendations. Neuro-Oncology, 25(Supplement_5), v138-v139. https://doi.org/10.1093/neuonc/noad179.0525
Engaging an advisory council and existing social media communities were effective approaches for identifying recommendations for enhancing trust and participation in genomic research. Regular, consistent, transparent communication with participants throughout the research process is key. Future efforts will operationalize and evaluate the impact of these recommendations on equity and representativeness of Registry participants.