The North Carolina Registry for Brain Health: An actionable strategy to include under‐represented groups in Alzheimer’s disease research

Background The North Carolina Institute of Medicine (NC IOM), in response to a legislative mandate, convened a Task Force on Alzheimer’s Disease and Related Dementias (2015/2016) to develop an actionable strategic plan to address the state’s rising rate of Alzheimer’s disease and related dementias and to promote brain health. A recurring state appropriation supports the North Carolina (NC) Registry for Brain Health (Registry), an outcome of the task force plan. Methods The NC Registry for Brain Health aims to increase public awareness of dementia services, brain health research, and opportunities to participate in clinical investigations. A focus is on under‐served communities traditionally not included in research. The Registry includes investigators from collaborating institutions across the state, including Duke University, East Carolina University, North Carolina A&T State University, the University of North Carolina at Chapel Hill, and Wake Forest School of Medicine. Governance is provided by investigators from each of the collaborating institutions with input from NC IOM, NC DHHS and stakeholders throughout the state. Results Phase I of the project focused on establishing the Registry infrastructure, including governance, site identification and contracting, programming of the Registry database, and website development. Two public kick off events announcing the Registry were held in June 2019. Phase II has focused on Registry enrollment to under‐served groups through an outreach strategy designed to overcome barriers of communication and trust. To date there have been over 60 outreach events across the state. Current enrollment stands at 4228 enrollees, of whom 34% are self‐identified as minority group members (30.5% African American) and 2.8% identified as Hispanic. As the Registry begins assisting research studies with recruitment, we plan to develop methods to effectively reach individuals with and without easy digital access Conclusions The NC Registry for Brain Health is growing rapidly and has a diverse membership representative of the state population, demonstrating that groups often under‐represented in research studies have an interest in participating in research. Interfacing with under‐served communities, through outreach events and other face to face interactions, is crucial to ensure the community has access to trusted information when making decisions about potential research participation.