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Registry for Brain Health to enlist North Carolinians into the campaign to understand, treat, and prevent memory disorders

Monday, June 10, 2019

More than 200 memory disorder researchers, community stakeholders for Alzheimer’s disease and aging care, and members of the public gathered in Asheville on June 1 to mark the launch of the North Carolina Registry for Brain Health. This registry, the first of its kind in the state, will allow the people of North Carolina to play a greater role in research ongoing across the state, leading to a better understanding of how to manage, treat, and prevent Alzheimer's disease and related conditions.

“The registry will expand the scope of Alzheimer’s disease research in two much-needed areas,” said Professor Kathleen Welsh-Bohmer, PhD, who oversaw the creation and launch of the registry. “First, by partnering with the community, the registry will facilitate promising research studies to improve brain health for all people across the state. Second, by partnering with trusted organizations, like state universities and other groups providing services, the registry will connect people to the resources they need for getting help with memory concerns.”

Adults of all ages from North Carolina are encouraged to join the registry, which will keep them up to date with ongoing research in the areas of aging and overall brain health as well as Alzheimer’s disease and related disorders. Once a part of the registry, members will learn about enrolling studies at 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, to consider getting involved if interested. No commitment is required and people can leave the registry whenever they like.

By joining the registry, individuals will be able to become a vital part of studies looking for possible biomarkers for Alzheimer’s disease that appear years before symptoms. Other studies may test new digital tools for assessing conditions, pioneer new brain imaging approaches, examine genetic risk factors for Alzheimer’s disease, or test potential therapies to delay or improve symptoms.

“We built the registry so that we will have a large pool of research ready volunteers, some with memory problems, many without such problems, who are willing to get involved in research that might help solve Alzheimer’s disease and similar conditions,” said Welsh-Bohmer. “Having a large group of willing volunteers helps us find people who might be interested in different kinds of studies and it allows researchers to draw from a very large group of people who represent the communities we serve.”

The NC Registry for Brain Health is supported by a recurring $1.2 million appropriation through the NC General Assembly. It is an extension and expansion of Duke’s Alzheimer’s Disease Prevention Registry, which was founded in 2009. This earlier registry of more than 5,000 individuals allowed rapid recruitment of clinically healthy people into studies focused on AD prevention and brain health. The NC Registry for Brain Health will build on this success by recruiting individuals, and by allowing research collaboration, from throughout the state.

Join the registry, or read more about it at its website here.