Disp-10. enhancing trust and representative participation in the international low grade glioma registry: community engagement strategies and recommendations

BACKGROUND The International Low Grade Glioma (LGG) Registry is a community of people with LGGs who have contributed data and specimens to facilitate genomic research. The Registry aims to discover the roles genetics and the environment play in glioma risk factors and treatment response. To ensure findings apply to a range of diverse populations and settings, it is crucial to build trust and encourage representative participation in the Registry. METHODS Three engagement strategies were used to gather recommendations for improving trust and participation in LGG genomic research. We established a Research Advisory Council (RAC) consisting of 25 members, including people with LGG, care partners, clinicians, researchers, advocates, and genomics and ethics experts. Additionally, we engaged two existing social media communities (the #BTSM community on Twitter, the Oligodendroglioma/LGG Warriors Facebook group) through separate discussions with each group over four months. Topics included: 1) Trust and benefits of genomic research; 2) Registry recruitment; 3) Registry data collection; and 4) Return of results. We used qualitative methods to summarize recommendations. RESULTS Feedback received from community members indicated a willingness to share information with the Registry. Recommendations related to recruitment message content and packaging, communication channels, data security, and conveying the individual- and population-level impacts of genomic research. The Registry’s messages should include clear information about how data and specimens are being used. Both research and individual-level findings should be shared back with participants and the broader community using accessible language, but without being paternalistic or promising cures or “miracles.” CONCLUSIONS 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.