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Aging Office Aims to Boost Minority Participation in Alzheimer’s Trials
The National Institute on Aging’s Office of Special Populations is making efforts to recruit African-Americans for clinical trial recruitment and post mortem brain donation, reflecting a primary goal of the nation’s official plan to address Alzheimer’s disease – to obtain a better understanding of how it affects diverse populations.
NIA’s most recent newsletter says increasing African American participation in medical research is “challenging,” possibly in part many African Americans “may mistrust medical research and the medical establishment based on past abuses such as the unethical Tuskegee Institute syphilis study."
However, some NIA-supported researchers at the Alzheimer’s Disease Center in collaboration with local communities are looking to develop “straightforward but highly effective ways” to include more African Americans in these studies to better understand its impact.
“Increasing brain donations among African Americans is fundamental for sparking health disparities research that explored some of the complex reasons behind this elevated risk,” said Dr. Carl Hill, director of the NIA Office of Special Populations. “Advancing our understanding of the onset and progress of the disease in African Americans may lead to culturally appropriate interventions that are specifically tailored to this at-risk population.
Cognitive neuropsychologist Dr. Lisa Barnes at Rush University in Chicago said there is a “legacy of mistrust” going beyond the Tuskegee study abuse. “We also need to be aware of the fact that African-American communities in general have lacked access to good health care and experienced poor relationships with medical providers.”
Research centers are working to recruit a more diverse staff while the researchers are working with community religious leaders and physicians to promote research participation, providing volunteers with transportation and flexible scheduling and meeting with potential volunteers in their homes, community centers, churches, public health communities and other neighborhood settings.
“You need to be in the community before asking anything from the community,” said Barnes.
For more information about NIA efforts to expand African-American clinical trial recruitment and brain donations, contact Dr. Nina Silverberg, Division of Neuroscience, at firstname.lastname@example.org
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