Joshua Grill, PhD, 3204 Biological Sciences III, University of California Irvine, Irvine, CA 92697,USA,
J Prev Alzheimers Dis. 2022;9(1):119-125. doi: 10.14283/jpad.2021.50.
Disparities in clinical research participation perpetuate broader health disparities. Recruitment registries are novel tools to address known challenges in accrual to clinical research. Registries may accelerate accrual, but the utility of these tools to improve generalizability is unclear.
To examine the diversity of a local on-line recruitment registry using the Area Deprivation Index (ADI), a publicly available metric of neighborhood disadvantage.
Retrospective analysis.
Data were collected in the University of California Irvine Consent-to-Contact Registry.
We categorized N=2,837 registry participants based on the ADI decile (collapsed into quintiles) using a state-based rankings.
We examined the proportion of enrollees per ADI quintile and quantified the demographics of these groups. We assessed willingness to participate in studies involving unique research procedures among the ADI groups.
Although registry enrollees represented the full spectrum of the ADI, they disproportionately represented less disadvantaged neighborhoods (lowest to highest quintiles: 42%, 30%, 15%, 6%, 7%). Compared to participants from less disadvantaged neighborhoods, participants from more disadvantaged neighborhoods were more often female, of non-white race, and Hispanic ethnicity. Despite demographic differences, ADI groups were observed to have similar willingness to participate in research studies.
People from more disadvantaged neighborhoods may be underrepresented in recruitment registries, increasing the risk that they will be underrepresented when using these tools to facilitate prospective recruitment to clinical research. Once enrolled in registries, participants from more disadvantaged neighborhoods may be equally willing to participate in research. Efforts to increase representation of participants from disadvantaged neighborhoods in registries could be an important first step toward increasing the generalizability of clinical research.
临床研究参与方面的差异使更广泛的健康差异永久存在。招募登记册是解决临床研究入组中已知挑战的新工具。登记册可能会加速入组，但这些工具提高普遍性的效用尚不清楚。
使用可公开获取的邻里劣势指标——区域贫困指数（ADI），检查本地在线招募登记册的多样性。
回顾性分析。
数据是在加利福尼亚大学欧文同意接触登记册中收集的。
我们根据 ADI 十分位数（合并为五分位数）对 N=2837 名登记册参与者进行了分类，使用了基于州的排名。
我们检查了每个 ADI 五分位数的入组人数，并量化了这些人群的人口统计学特征。我们评估了 ADI 群体中对涉及独特研究程序的研究的参与意愿。
尽管登记册参与者代表了 ADI 的全貌，但他们不成比例地代表了不太贫困的社区（最低到最高五分位数：42%、30%、15%、6%、7%）。与来自不太贫困社区的参与者相比，来自贫困程度较高社区的参与者更多是女性，是非白色人种，并且是西班牙裔。尽管存在人口统计学差异，但观察到 ADI 群体具有相似的参与研究的意愿。
来自贫困程度较高社区的人可能在招募登记册中代表性不足，这增加了使用这些工具促进临床研究前瞻性招募时代表性不足的风险。一旦登记在册，来自贫困程度较高社区的参与者可能同样愿意参与研究。增加登记册中来自贫困社区的参与者代表性的努力可能是提高临床研究普遍性的重要第一步。
