The NC Registry for Brain Health: Increasing Access to Brain Health Information and Research in Underserved & Under‐represented Communities

Abstract

AbstractBackgroundDiverse racial/ethnic representation in scientific studies is crucial for generalizability of results and development of potentially effective treatments. Racially diverse registries with research ready individuals have the potential to fill this gap. However, despite having signed up as part of a research registry and being invited to participate in clinical trials, many do not participate. To better understand research participation, the NC Registry for Brain Health surveyed its members to identify the characteristics of those likely to participate in research studies, their views on research, expectations when joining the group, and impediments to participation.MethodThe NC Registry for Brain Health has been state‐funded since 2018 with goals of increasing access for all to information and research opportunities in brain health. Focused recruitment to under‐served and under‐represented groups across the State occurs through community outreach events sponsored by a five member university network. An email survey was sent to the 5,946 Registry members enrolled as of October 15, 2021.ResultApproximately 10% (n = 576) responded to this anonymized survey. Most were older women with high levels of formal education (Table 1). Despite the Registry’s demographics of 28% African American enrollees, only 8% of the survey respondents self‐identified as African Americans. Most individuals joined the Registry for the joint purpose of getting involved in research and receiving information about brain health (75%). When asked to describe what “brain health research” means, most reported studies involving dementia risk factors and memory testing. All participants had been approached to get involved in studies, but only 60% recalled getting an email invitation. The biggest impediment noted for participating in studies was inconvenient appointment times. The participants also wanted more available studies and more information about the opportunities.ConclusionThis study suggests that most participants in the Registry are seeking to be informed about brain health and have access to research opportunities at times convenient with their schedules. There was an observed gap between African Americans enrolled in the research registry and those who participated in the survey. Addressing gaps in research involvement of under‐represented groups in research is necessary to achieve inclusive representative science.