Abstract：
Black individuals are underrepresented in randomized clinical trials (RCTs). Willingness to participate is a frequently cited explanation. However, the few studies that have investigated willingness to participate demonstrated no difference between Black individuals and other groups. We sought to measure willingness to participate by focusing on sickle cell disease (SCD), in which approximately 90% of affected individuals are Black. We conducted an analysis of 17 RCTs. A level of clarity was defined and correlated with each article\'s transparency in reporting patient enrollment data. Calculated measures of acceptance ranged from 32% to 93.5%. Calculated completion rates ranged from 58.8% to 100%. Weighted measures of acceptance and completion were 59.1% and 83.8%, respectively. Our study is limited by focusing solely on studies pertinent to SCD and only a minority of publications reviewed provided sufficient patient enrollment data. Yet, our results suggest that decreased willingness to participate does not account for underrepresentation of Black individuals.
摘要：
在随机临床试验（RCT）中，黑人个体的代表性不足。参与意愿是一个经常被引用的解释。然而,少数调查参与意愿的研究表明，黑人个体和其他群体之间没有差异。我们试图通过关注镰状细胞病(SCD)来衡量参与的意愿，其中大约90%的受影响个体是黑人。我们对17项随机对照试验进行了分析。定义了清晰度水平，并与每篇文章报告患者登记数据的透明度相关。计算的接受度量范围从32%到93.5%。计算完成率从58.8%到100%不等。验收和竣工的加权措施分别为59.1%和83.8%，分别。我们的研究仅限于与SCD相关的研究，只有少数审查的出版物提供了足够的患者登记数据。然而，我们的研究结果表明,参与意愿下降并不能解释黑人个体的代表性不足.
