Shortfall of 100,000 Participants Hampers Alzheimer’s, Dementia Trials

Megan Brooks

July 24, 2018

CHICAGO — Recruiting participants for clinical trials investigating Alzheimer's disease and related dementias continues to be a major challenge — a topic that took center stage at a special session here at the Alzheimer's Association International Conference (AAIC) 2018.

Engagement and participation in clinical trials have not kept pace with the number of clinical trials. More than 200 trials currently underway are seeking more than 100,000 participants, Marie Bernard, MD, deputy director of the National Institute on Aging (NIA), noted during a press briefing. "Many research sites are slow to meet volunteer recruitment targets, while others do not reach their targets at all," she said.

A fundamental need, she explained, is to understand what motivates and facilitates, or impedes, people from diverse communities to participate in dementia research.

The Alzheimer's Association and the NIA recently brought together a wide range of stakeholders to develop a comprehensive national strategy for recruitment and participation in Alzheimer's clinical research.

The strategy seeks to engage broad segments of the public in dementia research, with a particular focus on underrepresented communities, to successfully and more quickly enroll and retain individuals in studies that may ultimately lead to effective ways to prevent and treat dementia.

"It's going to take a village" to address recruitment challenges, said Bernard, and that effort needs to start in local communities.

"There is a need to be within the local community and have that community partnership," Heather Snyder, PhD, senior director of medical and scientific operations at the Alzheimer's Association, told Medscape Medical News. "Maybe we need to recruit differently than we have always done in the past. Maybe it's working with churches or other community organizations. Increased education and awareness and engagement among clinicians will also be important," said Snyder.

A Success Story

One community outreach program in Indiana has had success boosting recruitment rates.

At AAIC 2018, Mary Guerriero Austrom, PhD, associate dean for diversity affairs and professor of Alzheimer's disease education at Indiana University School of Medicine (IUSM), Indianapolis, reported on 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.

The CAB represents a dozen leaders from predominantly African American communities in central Indiana and include pastors, retired volunteers, an elder law attorney, and representatives from the state and county boards of health.

Austrom and colleagues worked closely with the CAB to help with messaging concerning Alzheimer's research, and they created a research recruitment video specifically for minority communities. They identified locations and designed outreach activities through which they could work within targeted minority communities.

Over 12 months, community-based outreach resulted in referals of 185 African Americans, 68 whites, and 67 patients of other groups to the IADC. The outreach program led to a more than doubling of minority representation at the IADC, from 8.8% to 19%, surpassing the goal of 18% minority participation, Austrom said.

Outreach efforts also led to 300 African American volunteers being added to the Alzheimer's Association TrialMatch database, a clinical studies matching service that connects people with Alzheimer's, caregivers, and healthy volunteers with research studies that are currently recruiting. These are people who can be contacted for potential clinical trial participation, Austrom said.

"Collaborating with the community as equal partners is essential. The addition of dedicated staff from the minority community was key to our success," Austrom said in a conference statement.

"Working together, we reached out to the African American community in central Indiana to provide education about dementia and Alzheimer's disease, what research is, the importance of diverse populations engaging in research, and finally, asking for the community to volunteer for research at IUSM and register for the Alzheimer's Association TrialMatch program," she noted.

Snyder said people with dementia, caregivers, and a wide variety of other volunteers are needed "today" to help advance progress and provide "valuable insights into potential treatments and preventions, successful caregiving, and better understanding and managing our Alzheimer's risk."

Funding for the research was provided by the National Institutes of Health, the Indiana Clinical and Translational Sciences Institute, and the Indiana State Department of Health. Dr Snyder, Dr Bernard, and Dr Austrom have disclosed no relevant financial relationships.

Alzheimer's Association International Conference (AAIC) 2018. Abstract P2-546, presented July 23, 2018.

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