SDSU/UCSD Joint Doctoral Program in Clinical Psychology, San Diego, California, USA.
Department of Psychiatry, University of California, San Diego, La Jolla, California, USA.
Alzheimers Dement. 2024 Oct;20(10):7403-7410. doi: 10.1002/alz.14177. Epub 2024 Aug 14.
Black women are sorely underrepresented in studies of Alzheimer's disease and related dementias (ADRD) despite higher rates of ADRD diagnoses than in non-Hispanic White women. There are many reasons for underrepresentation, including medical mistrust, limited access to clinical studies, and restrictive study inclusion criteria. These pervasive barriers to research participation are often not considered during study development and, if eventually thought of tend to be after the fact. Community-engaged research (CER) approaches are an effective method for reducing participation barriers. This article describes how CER approaches were used to develop the Black Women Inflammation and Tau Study (BWITS), a prospective study to identify biopsychosocial risk factors for ADRD in Black women. Guidelines discussed here for future ADRD research in diverse populations are informed by Community-Based Participatory Research (CBPR), the National Institute on Minority Health and Health Disparities (NIMHD), and the Patient-Centered Outcomes Research Institute (PCORI). HIGHLIGHTS: Understand the historical tragedies related to medical practices and research designs that may contribute to the underrepresentation of Black Americans in research studies today. Highlight community-engaged research approaches that effectively reduce participation barriers in minoritized groups. Review Community-Based Participatory Research, National Institute of Minority Health and Health Disparities, and the Patient-Centered Outcomes Research Institute guidelines for conducting research with minoritized communities. Describe using the three frameworks to inform the study development protocol for the Black Women Inflammation and Tau Study. Conclude by offering study design considerations that we hope can be a helpful starting point for others conducting research with minoritized communities.
黑人群体在阿尔茨海默病及相关痴呆症（ADRD）的研究中严重代表性不足，尽管其 ADRD 诊断率高于非西班牙裔白人群体。代表性不足的原因有很多，包括对医疗的不信任、获取临床研究的机会有限，以及研究纳入标准的限制。这些参与研究的普遍障碍在研究开展过程中往往没有被考虑到，如果最终被考虑到，往往也是在事后。社区参与式研究（CER）方法是减少参与障碍的有效方法。本文介绍了 CER 方法如何用于开发黑人女性炎症和 Tau 研究（BWITS），这是一项前瞻性研究，旨在确定黑人女性患 ADRD 的生物心理社会风险因素。这里讨论的为不同人群开展 ADRD 研究的指南，是受社区为基础的参与性研究（CBPR）、国家少数民族健康和健康差异研究所（NIMHD）和以患者为中心的结果研究所（PCORI）的启发。要点：了解可能导致今天美国黑人在研究中代表性不足的与医疗实践和研究设计相关的历史悲剧。强调能够有效减少少数群体参与障碍的社区参与式研究方法。审查开展少数群体研究的社区为基础的参与性研究、国家少数民族健康和健康差异研究所和以患者为中心的结果研究所的指南。描述使用这三个框架为黑人女性炎症和 Tau 研究提供研究发展协议的信息。最后，我们提供了一些研究设计方面的考虑，希望这可以为其他与少数群体开展研究的人提供一个有用的起点。
