Association of race/ethnicity with renewal to the Consent‐to‐Contact (C2C) local recruitment registry

Abstract

AbstractBackgroundOnline recruitment registries may serve as tools for accelerating the enrollment of historically underrepresented participants in Alzheimer’s disease (AD) trials. A potential challenge, however, is retaining registry participants until they can be recruited into prospective studies. We sought to examine the association of race/ethnicity with renewal among adults over age 50 who enrolled in a local online recruitment registry.MethodStudy participants enrolled in the University of California, Irvine Consent‐to‐Contract (C2C) registry, a local online registry designed to improve recruitment into AD studies. At enrollment, participants completed an online structured questionnaire to assess sociodemographic characteristics, source of recruitment and self‐reported medical history. Research attitudes were assessed with the 7‐item Research Attitude Questionnaire (RAQ). We examined the frequency of participant completion of annual renewal within 15 months from initial enrollment to the registry. To evaluate the association of race/ethnicity with first‐year renewal, we used ordinal logistic regression models that were adjusted for age, sex, educational attainment, number of chronic conditions and research attitudes.ResultAmong 3,065 included C2C participants, the average age at enrollment was 66 years, 87% (n = 2,658) were Non‐Hispanic (NH) White, 6% (n = 191) were Hispanic/Latino, 6% (n = 180) were NH) Asian, and 1% (n = 36) were NH Black. Compared to NH Whites, Hispanics/Latinos exhibited a 40% lower odds of renewal (adjusted Odds Ratio [aOR] = 0.60, 95% Confidence Interval [CI]: 0.44 ‐ 0.82), 32% lower odds of renewal for NH Asians (aOR = 0.68, 95% CI: 0.50 ‐ 0.93) and 16% lower odds for NH Blacks (aOR = 0.84, 95% CI: 0.43‐1.66). Higher age, more years of education, and better research attitudes was associated with higher odds of first‐year renewal in the fully adjusted model.ConclusionUnderrepresented populations may be at greater risk for loss to follow‐up in online recruitment registries. Future research addressing potential barriers to continued participation and interventions to improve retention will be critical to maximize the impact of registries.