Virginia Memory Project: Using the Healthy Brain Initiative Roadmap to design a statewide dementia registry

Abstract

INTRODUCTIONThe Virginia Memory Project (VMP) is a statewide epidemiological registry for Alzheimer's disease and related disorders (ADRD) and other neurodegenerative conditions. It aims to support dementia research, policy, and care by leveraging the Centers for Disease Control (CDC) Healthy Brain Initiative (HBI) Roadmap.METHODSTo capture comprehensive data, the VMP integrates self‐enrollment and automatic enrollment using Virginia's All‐Payer Claims Database (APCD). It also adapts Behavioral Risk Factors Surveillance Survey (BRFSS) modules for self‐reported cognitive and caregiving data, offering connections to research, clinical services, and education.RESULTSVirginia successfully codified the VMP in the 2024 general assembly session.DISCUSSIONThe VMP demonstrates a novel approach to Alzheimer's Disease and Related Disorders (ADRD) surveillance by combining traditional registry functions with community engagement and workforce development. Future efforts will focus on increasing enrollment, especially among underrepresented groups, to enhance data‐driven dementia policy and care in Virginia.Highlights Integrated the Healthy Brain Initiative (HBI) domains into the newest statewide epidemiological dementia registry in the Commonwealth of Virginia. Collected data and identified gaps in the current research related to dementia and Alzheimer's related diseases. Aimed to mitigate barriers to dementia registry enrollment by identifying significant underdiagnosis and underrepresentation of racial and ethnic minority groups. Developed solutions to alleviate the current data and enrollment disparities and to connect individuals to research, physicians, and community groups.