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Alzheimer's Disease (AD) is a continually advancing neurodegenerative disorder, distinguished by escalating memory loss, cognitive dysfunction, and dementia. The disease unfolds in three stages: preclinical, mild cognitive impairment (MCI), and dementia. Its onset is insidious, and the progression gradual, with the cause not well explained by other disorders.
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Related Experiment Video

Updated: Jun 2, 2025

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

Annie Rhodes1, Ashley Staton1, Evan French2

  • 1Virginia Center on Aging, College of Health Professions, Virginia Commonwealth University, Richmond, Virginia, USA.

Alzheimer'S & Dementia : the Journal of the Alzheimer'S Association
|January 16, 2025
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Summary

The Virginia Memory Project (VMP) is a new registry for Alzheimer's disease and related disorders (ADRD), using innovative methods to improve dementia research and care. It aims to increase enrollment and address disparities for better public health outcomes.

Keywords:
CDC BOLD ACT: VirginiaHealthy Brain Initiativedementia innovation, dementia policydementia registryepidemiologyhealth equity

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Area of Science:

  • Neuroscience
  • Public Health
  • Epidemiology

Background:

  • The Virginia Memory Project (VMP) is a statewide epidemiological registry for Alzheimer's disease and related disorders (ADRD) and other neurodegenerative conditions.
  • It leverages the Centers for Disease Control (CDC) Healthy Brain Initiative (HBI) Roadmap to support dementia research, policy, and care.

Purpose of the Study:

  • To establish a novel approach to ADRD surveillance by integrating traditional registry functions with community engagement.
  • To address data and enrollment disparities, particularly for underrepresented racial and ethnic minority groups.
  • To connect individuals with dementia to research opportunities, clinical services, and community support.

Main Methods:

  • Integrated self-enrollment and automatic enrollment using Virginia's All-Payer Claims Database (APCD).
  • Adapted Behavioral Risk Factors Surveillance Survey (BRFSS) modules for self-reported cognitive and caregiving data.
  • Incorporated Healthy Brain Initiative (HBI) domains into the registry.

Main Results:

  • Virginia successfully codified the VMP during the 2024 general assembly session.
  • Identified current research gaps and disparities in dementia diagnosis and registry enrollment.
  • Developed strategies to mitigate underrepresentation of minority groups in dementia research.

Conclusions:

  • The VMP offers a unique model for dementia surveillance, combining registry functions with community engagement and workforce development.
  • Future efforts will prioritize increasing enrollment among diverse populations to enhance data-driven dementia policy and care.
  • The project aims to improve dementia care and research through comprehensive data collection and community connection.