An overarching goal of CSER 2 and NCGENES 2 is to ensure the outcomes of genomic medicine research are relevant and the potential benefits accessible to diverse populations that encompass medically underserved and under-represented individuals. To accomplish this goal, we will engage stakeholders in concerted multimodal efforts to gain insight from clinician and parent/caregiver stakeholders that may influence research decisions throughout the project.

Clinician stakeholders from the different research sites in North Carolina were actively involved in the pre-award/grant-development period to outline plans that met study goals and clinic needs. Continued engagement with the clinician stakeholders through regular meetings and communications enabled necessary troubleshooting of clinician workflows and measures, as well as the ability to partner on data analysis and outcome dissemination. Insight from parent/caregiver stakeholders was also essential to the development of participant-oriented processes and materials. We have engaged three parent/caregiver groups: (1) individuals with prior genomic research experience; (2) individuals with personal experience as a caregiver of a child with a genetic condition; and (3) individuals who are caregivers and/or advocates for families of children with neurodevelopmental needs. Parents/caregivers who had participated in the original NCGENES study from under-represented and underserved population groups provided experiential perspective on motivations for research participation, ways to facilitate participation by supporting families through long clinic visits, and ways to encourage engagement between caregivers and their child’s doctors [57]. Recruitment telephone scripts and participant compensation plans were revised with feedback from caregiver members from a sickle cell disease community network. A Community Consult Team (CCT) was established to provide continuing materials refinement and ongoing insight. The CCT comprises a diverse group of individuals who are parents of children with neurodevelopmental needs, and/or advocates for families, especially those with special needs children [57]. Most of the CCT members also identify as members of under-represented and underserved populations. Early engagement with the CCT enabled the integration of revised language and format for consent, educational, and survey materials that are more responsive to the needs of our target study populations. Engaging with diverse stakeholders early and throughout the research process will enable our study to be more responsive to the needs of our diverse population and to troubleshoot recruitment and retention challenges as they arise. Throughout the study, all stakeholders (clinical and non-clinical/community) will continue to be informed of study progress and outcomes through regular meetings and periodic newsletters.

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