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CHICAGO – Recruiting participants for clinical trials on Alzheimer's disease and related dementias continues to be a major challenge – a topic that has taken center stage at one time. Special Session Here at the International Conference of the Alzheimer's Association (AAIC) 2018.
Participation in clinical trials has not kept pace with clinical trials. More than 200 ongoing trials are seeking more than 100,000 participants, said Marie Bernard, MD, deputy director of the National Institute on Aging (NIA), during a press briefing. "Many research sites are slow to reach volunteer recruitment targets, while others are not meeting their goals," she said.
A fundamental need is to understand what motivates and facilitates or prevents
The Alzheimer's Association and the NIA recently convened a wide range of stakeholders to develop a comprehensive national strategy for recruitment and participation in the community. clinical research on Alzheimer's disease
. the public in dementia research, with a particular focus on underrepresented communities, to enlist and successfully retain individuals in studies that could lead to effective ways to prevent and treat dementia.
According to Bernard, we must tackle recruitment problems, and this effort must begin in local communities.
"It Must" Heather Snyder, PhD, Senior Director of Medical and Scientific Operations at the Alzheimer's Association, said Medscape Medical News . "Maybe we need to recruit differently from this that we have always done in the past, working with churches or other community organizations, etc., "said Mr. Snyder
19659009] A Community Outreach Program in Indiana Succeeded to increase recruitment rates
At AAIC 2018, Mary Guerriero Austrom, PhD, vice-dean for diversity affairs and professor of education on Alzheimer's disease at the University of Medicine d & rsquo; Indianapolis., Reported a pilot project that used a collaborative research model to work with a Community Advisory Board (CAB) at the Indiana Alzheimer Disease Center (IADC) and the Greater Indiana Chapter of the Alzheimer's Association. [19659002] The CAB represents a dozen leaders of predominantly African-American communities in central Indiana and include pastors, retired volunteers, a senior law attorney, and representatives of the Austrom stat and his colleagues worked closely with the CAB to help disseminate messages about Alzheimer's disease research, and they created a recruitment video for researchers specifically for minority communities. They identified places and developed outreach activities through which they could work within targeted minority communities.
More than 12 months ago, community outreach resulted in references from 185 African-Americans, 68 Whites and 67 patients from other groups at CID. The outreach program has doubled minority representation in the IADC from 8.8 percent to 19 percent, exceeding the 18 percent target for minority participation, Austrom said.
Outreach efforts have also helped to add 300 African-American volunteers to the TrialMatch database of the Alzheimer's Association, a clinical-trial matching service that connects people Alzheimer's disease sufferers, caregivers and healthy volunteers to research studies being recruited. These people can be contacted for possible participation in a clinical trial, Austrom said.
"It is essential to collaborate with the community as equal partners, and the addition of dedicated minority community staff is critical to our success. "By working together, we contacted the African-American community of central Indiana to inform us about dementia and Alzheimer's disease, about research, about the importance of research in different populations and finally on the community. "Snyder said that people with dementia, caregivers and a wide variety of other volunteers are needed" today "to advance progress and provide" valuable " an overview of possible treatments and preventions, successful care, and a better understanding and management of our risk of Alzheimer's. "
Fund The research was conducted by the National Institutes of Health , the Indiana Clinical and Translational Sciences Institute and the Indiana Department of Health. Dr. Snyder, Dr. Bernard and Dr. Austrom did not reveal any relevant financial relationship.
International Conference of the Alzheimer's Association (AAIC) 2018. Summary P2-546, submitted July 23, 2018.
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