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A Novel Approach to Recruitment for Alzheimer’s Disease Research Studies: The Experience of the Center for Neurodegeneration and Translational Neuroscience (CNTN)
Aaron Ritter, Kat Hartley-Mack, Marlen Ibarra, Kirsten Calvin, Jeffrey Cummings
Cleveland Clinic Lou Ruvo Center for Brain Health, Las Vegas Nevada
Background: Recruitment for Alzheimer’s disease (AD) research studies is challenging. With estimates suggesting that more than 50,000 participants are needed to test experimental therapies currently in the AD pipeline, there is a great need to speed up recruitment for AD research. Recruitment of minority groups to AD studies is particularly dismal and reduces the generalizability of research findings.
Methods: To support recruitment for the clinical core of the Center for Neurodegeneration and Translational Research (CNTN) we implemented a novel, multi-modal recruitment strategy to create a clinical cohort that matched the ethnic, racial and geographic makeup of the state of Nevada. Highlights of this research strategy include: 1) A Community Outreach Committee—an advisory board consisting of nine influential members from underrepresented patient groups; 2) HealthyBrains.org—a web-based, education and recruitment tool; 3) Careful disclosure of study results to participants.
Results: In the past 12 months recruitment for the clinical core has expanded by more than 80 participants. During the same time the diversity of the cohort has also grown considerably.
Discussion: New approaches to clinical trial recruitment are urgently needed. The use of strategies that engage and empower participants can be helpful. Strategies specifically designed for minority patient groups are crucial to improve minority representation.
Grant Support: 1P20GM109025-01A1