Remuneration and Recruitment of Study Participants for AD Cohort Studies From the General Public and From Minority Communities

Abstract

Introduction: Offering remuneration for participation in studies of aging and Alzheimer Disease (AD) may improve recruitment, particularly among minoritized and low-income groups. But remuneration may also raise ethical problems and reduce altruistic motivations for participation.Methods: A nationally representative sample of Americans (N = 2030) with large (N = 500) Black and Hispanic oversamples was asked about willingness to participate in a longitudinal AD cohort study after random assignment of remuneration ($0, $50/ visit, $100/visit). Respondents were then asked about their perceived burden, risks, and societal contribution from participation.Results: An offer of remuneration increased willingness to participate, with no difference between $50 and $100. The increase was similar across racial, ethnic, and income groups. Remuneration did not affect perceived risks or altruistic benefits. Compensation caused Whites and Hispanics, but not Blacks, to lower the perceived burden.Discussion: Modest levels of remuneration are likely to improve recruitment to AD research studies without causing collateral ethical or motivation problems. Remuneration does not differentially enhance minority recruitment.

COVID‐19 pandemic's relationship with enrollment at US Alzheimer's Disease Research Centers

“… 33 , 34 Furthermore, data from the smoking cessation trial of Halpern and colleagues’ RETAIN study 34 shows that participant payments increased participation more among Black/African American participants than among White participants, suggesting that incentives may enhance the diversity of study enrollment (S. Halpern, personal communication, 4/19/2023), although another recent non‐interventional survey‐based study on recruitment into a hypothetical longitudinal AD cohort study did not find differential increases to minority enrollment. 35 While we are extrapolating from the randomized controlled trial context to the observational ADRC context, given that many centers in the network do not offer participant incentives, this may be an impactful, evidence‐based intervention to speed enrollment recovery rates. Best practices regarding ADRC participant payment are newly available via the NACC website ( https://files.alz.washington.edu/documentation/remuneration‐guidelines.pdf ).…”