Supplementary Material for: Establishment of a Predominantly African-American Cohort for the Study of Alzheimer’s Disease

<i>Background/Aims:</i> The recruitment of culturally diverse subject populations into research studies, particularly African-Americans (AA), has been the focus of intense interest by many groups. <i>Methods:</i> In this paper, we present the methodology utilized to create a predominantly AA cohort for the longitudinal study of risk factors in Alzheimer’s disease (AD). The underlying strategy was that of identifying geographically diverse clinical venues within South Carolina (SC) where large numbers of AA patients already come to seek medical care. <i>Results:</i> This strategy was successful, although recruitment rates for AA subjects (43.4%) still fell below those for white subjects (70.3%; p = 0.0025). Subject characteristics of AA subjects that chose to enroll were not substantially different from those that declined to participate. The demographic characteristics of this cohort were largely similar to those of the SC Alzheimer Disease Registry, a population-based database. The problems of standardization of subject recruitment and assessment across diverse clinical venues are also addressed. <i>Conclusion:</i> The utilization of geographically diverse sites for research recruitment where minorities already receive medical care is one practical solution to the problem of minority participation in research. Multi-site recruitment to improve minority recruitment can be accomplished with acceptable standardization and inter-rater reliability.

研究背景与目的：将具有文化多样性的受试人群纳入研究，尤其是非裔美国人（African-Americans，AA），一直是众多研究团队高度关注的议题。
研究方法：本文介绍了为开展阿尔茨海默病（Alzheimer’s disease，AD）风险因素纵向研究而构建以非裔美国人为主的受试队列所采用的研究方法。其核心策略为，在南卡罗来纳州（South Carolina，SC）范围内筛选地理分布广泛的临床医疗机构，这些机构已有大量非裔美国人患者前来就诊。
研究结果：该招募策略取得了成功，尽管非裔美国人受试者的招募率（43.4%）仍低于白人受试者（70.3%；p = 0.0025）。选择参与研究的非裔美国人受试人群与拒绝参与的人群在基本特征上并无显著差异。本队列的人口统计学特征与基于人群的数据库——南卡罗来纳州阿尔茨海默病登记库（SC Alzheimer Disease Registry）基本一致。此外，本文还探讨了在不同临床机构间实现受试者招募与评估标准化的相关问题。
研究结论：利用少数族裔患者常规就诊的地理分布广泛的临床站点开展研究招募，是解决少数族裔参与研究率偏低问题的切实可行方案之一。通过多站点招募以提升少数族裔受试者招募率，可在可接受的标准化程度与评定者间信度下实现。