Facilitators of research registry enrollment and potential variation by race and gender

Abstract

IntroductionLittle is known about what motivates people to enroll in research registries. The purpose of this study is to identify facilitators of registry enrollment among diverse older adults.MethodsParticipants completed an 18-item Research Interest Assessment Tool. We used logistic regression analyses to examine responses across participants and by race and gender.ResultsParticipants (N=374) were 58% black, 76% women, with a mean age of 68.2 years. All participants were motivated to maintain their memory while aging. Facilitators of registry enrolled varied by both race and gender. Notably, blacks (estimate=0.71, p<0.0001) and women (estimate=0.32, p=0.03) were more willing to enroll in the registry due to home visits compared with whites and men, respectively.ConclusionsResearchers must consider participant desire for maintaining memory while aging and home visits when designing culturally tailored registries.

Predictors of Willingness to Enroll in Hypothetical Alzheimer Disease Biomarker Studies that Disclose Personal Results

“…In stratified analyses, only research attitudes were a significant predictor across each of the enrollment willingness outcomes for both the White and Black subsample analyses. Our findings differ from prior findings that Whites report more positive research attitudes than Black participants,20,26,27 and are consistent with findings from Glover et al that older Black and White adults did not differ on research attitudes 6. Research attitudes incorporate but are not solely made up of trust in medical research.…”

“…The RAQ-7 assesses a mix of personal and general views toward research and therefore may not fully capture the nuance of trust. Further, older Black adults6,20 and individuals who have participated in research before,28 like our sample, likely have more trust in medical research. WRAP and WADRC participant community-based recruitment/engagement strategies coupled with the experience of participating in research could increase our participants trust and therefore improve their attitudes towards research.…”

“…Racialized determinants of health like transportation access, time constraints, and experiences of discrimination (EOD) in health care may influence racialized individual’s decisions to participate in biomedical research. Prior studies assessing Black individuals’ participation in AD research highlights the critical role community-based events and long-standing relationships play in bolstering recruitment and retention of Black individuals 3,6,7. Qualitative study results suggest study participation may result from researcher-community relationships that extend beyond immediate research interests, include community dissemination of findings, and emphasize study relevance to Black adults 8.…”

“…Prior studies assessing Black individuals’ participation in AD research highlights the critical role community-based events and long-standing relationships play in bolstering recruitment and retention of Black individuals. 3 , 6 , 7 Qualitative study results suggest study participation may result from researcher-community relationships that extend beyond immediate research interests, include community dissemination of findings, and emphasize study relevance to Black adults. 8 This prior body of work demonstrates perceived benefit, minimal risk, 9 trust, transparency, and reduced fear may be associated with increased likelihood to participate in AD prevention trials.…”

Digital culturally tailored marketing for enrolling Latino participants in a web‐based registry: Baseline metrics from the Brain Health Registry

“…Our findings add to the emerging evidence of using digital marketing for increasing enrollment in digital studies 41,[48][49][50] and provide further support for the importance of developing culturally tailored enrollment efforts informed by the community to improve representation of online research registries. 24,27,37,[51][52][53][54][55][56][57] Because the digital material can be tailored to other ethnocultural or socioeconomic populations and promoted via social media to adults living in other states, countries, and rural areas, this strategy has high potential for scalability and improving the reach of enrollment efforts.…”