A new online registry that tracks cases of Alzheimer’s disease and other forms of dementia in Virginia is now enshrined into law in the commonwealth.
The Virginia Memory Project, a collaboration between Virginia Commonwealth University and the Virginia Department of Health (VDH), was codified into law on April 2. The project is meant to track and support people directly or indirectly impacted by dementia.
Data for the registry comes from de-identified insurance claim data and an online questionnaire that is meant to determine someone’s health and dementia risk factors.
The project was started in 2021 by Annie Rhodes, director of The Virginia Memory Project.
According to a recent article on the project, Rhodes received a grant from VDH to build a database for dementia and other kinds of cognitive disorders in the state. The project then became one of four dementia registries in the country.
Insurance claim data will reportedly be used by the research team with the Virginia Memory Project to better understand how many Virginians are diagnosed and treated for dementia and other related disorders, including amyotrophic lateral sclerosis, multiple sclerosis and Parkinson’s disease.
Rhodes added she wanted caregivers to be included in the survey data due to their providing care for people with memory loss, which she described as being as a full time job.
“Through this survey, we hope to help fill in the most important gaps in dementia, which is people who have historically and contemporarily not been represented in health care,” Rhodes said in the news story.
Rhodes envisions the data collected through the project will “help policymakers and public health workers identify hotspots, project trends, allocate resources and identify solutions for Virginians with memory loss and their caregivers.”
