Engaging Community Stakeholders in Research on Best Practices for Clinical Genomic Sequencing

Abstract

<b>Aim:</b> Maximizing the utility and equity of genomic sequencing integration in clinical care requires engaging patients, their families, and communities. The NCGENES 2 study explores the impact of engagement between clinicians and caregivers of children with undiagnosed conditions in the context of a diagnostic genomic sequencing study. <b>Methods:</b> A Community Consult Team (CCT) of diverse parents and advocates for children with genetic and/or neurodevelopmental conditions was formed. <b>Results:</b> Early and consistent engagement with the CCT resulted in adaptations to study protocol and materials relevant to this unique study population. <b>Discussion:</b> This study demonstrates valuable contributions of community stakeholders to inform the implementation of translational genomics research for diverse participants.