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本文引用的文献

1
Biological Essentialism Correlates With (But Doesn't Cause?) Intergroup Bias.生物本质主义与(但并不导致?)群体间偏见相关。
Pers Soc Psychol Bull. 2024 Jul;50(7):1080-1097. doi: 10.1177/01461672231158095. Epub 2023 Mar 28.
2
What Structural Racism Is (or Is Not) and How to Measure It: Clarity for Public Health and Medical Researchers.什么是(或不是)结构种族主义,以及如何衡量它:为公共卫生和医学研究人员澄清。
Am J Epidemiol. 2022 Aug 22;191(9):1521-1526. doi: 10.1093/aje/kwac112.
3
Patients asking about APOE gene test results? Here's what to tell them.患者询问 APOE 基因检测结果?以下是需要告诉他们的内容。
J Fam Pract. 2022 May;71(4):E1-E7. doi: 10.12788/jfp.0397.
4
Effect of Race on Prediction of Brain Amyloidosis by Plasma Aβ42/Aβ40, Phosphorylated Tau, and Neurofilament Light.血浆 Aβ42/Aβ40、磷酸化 tau 和神经丝轻链对脑淀粉样变预测的种族影响。
Neurology. 2022 Jul 19;99(3):e245-e257. doi: 10.1212/WNL.0000000000200358. Epub 2022 Apr 21.
5
Establishing a Framework for Gathering Structural and Social Determinants of Health in Alzheimer's Disease Research Centers.建立阿尔茨海默病研究中心健康结构和社会决定因素收集框架。
Gerontologist. 2022 May 26;62(5):694-703. doi: 10.1093/geront/gnab182.
6
Black and White individuals differ in dementia prevalence, risk factors, and symptomatic presentation.黑人和白人在痴呆症的患病率、风险因素和症状表现方面存在差异。
Alzheimers Dement. 2022 Aug;18(8):1461-1471. doi: 10.1002/alz.12509. Epub 2021 Dec 2.
7
Blood-based biomarkers for Alzheimer's disease: towards clinical implementation.用于阿尔茨海默病的血液生物标志物:迈向临床应用
Lancet Neurol. 2022 Jan;21(1):66-77. doi: 10.1016/S1474-4422(21)00361-6. Epub 2021 Nov 24.
8
Eliminating race-based reference ranges in haematology: a call to action.消除血液学中基于种族的参考范围:行动呼吁。
Lancet Haematol. 2021 Jun;8(6):e462-e466. doi: 10.1016/S2352-3026(21)00106-X.
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Amyloid PET Imaging in Self-Identified Non-Hispanic Black Participants of the Anti-Amyloid in Asymptomatic Alzheimer's Disease (A4) Study.无症状阿尔茨海默病抗淀粉样蛋白(A4)研究中自我认定的非西班牙裔黑人群体的淀粉样蛋白 PET 成像。
Neurology. 2021 Mar 16;96(11):e1491-e1500. doi: 10.1212/WNL.0000000000011599. Epub 2021 Feb 10.
10
Recalibrating the Use of Race in Medical Research.重新校准种族在医学研究中的应用。
JAMA. 2021 Feb 16;325(7):623-624. doi: 10.1001/jama.2021.0003.

避免重蹈历史覆辙:关于在阿尔茨海默病和阿尔茨海默病相关痴呆症研究中使用种族问题,给科学家的两点警示。

Let's Not Repeat History's Mistakes: Two Cautions to Scientists on the Use of Race in Alzheimer's Disease and Alzheimer's Disease Related Dementias Research.

机构信息

Department of Psychiatry, Perlman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA.

Department of Medical Ethics and Health Policy, Perelman School of Medicine and Co-Director of the Population Aging Research Center (PARC), University of Pennsylvania, Philadelphia, PA, USA.

出版信息

J Alzheimers Dis. 2023;92(3):729-740. doi: 10.3233/JAD-220507.

DOI:10.3233/JAD-220507
PMID:36806503
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC10123855/
Abstract

Alzheimer's disease and Alzheimer's disease related dementias (AD/ADRD) research has advanced gene and biomarker technologies to aid identification of individuals at risk for dementia. This innovation is a lynchpin in development of disease-modifying therapies. The emerging science could transform outcomes for patients and families. However, current limitations in the racial representation and inclusion of racial diversity in research limits the relevance of these technologies: AD/ADRD research cohorts used to define biomarker cutoffs are mostly White, despite clinical and epidemiologic research that shows Black populations are among those experiencing the greatest burdens of AD/ADRD. White cohorts alone are insufficient to characterize heterogeneity in disease and in life experiences that can alter AD/ADRD's courses. The National Institute on Aging (NIA) has called for increased racial diversity in AD/ADRD research. While scientists are working to implement NIA's plan to build more diverse research cohorts, they are also seeking out opportunities to consider race in AD/ADRD research. Recently, scientists have posed two ways of including race in AD/ADRD research: ancestry-based verification of race and race-based adjustment of biomarker test results. Both warrant careful examination for how they are impacting AD/ADRD science with respect to specific study objectives and the broader mission of the field. If these research methods are not grounded in pursuit of equity and justice, biases they introduce into AD/ADRD science could perpetuate, or even worsen, disparities in AD/ADRD research and care.

摘要

阿尔茨海默病和相关痴呆症(AD/ADRD)的研究已经推动了基因和生物标志物技术的发展,以帮助识别痴呆症高危人群。这一创新是开发疾病修正疗法的关键。新兴科学可能会改变患者和家庭的结局。然而,目前在研究中代表性不足以及缺乏种族多样性,限制了这些技术的相关性:用于定义生物标志物截止值的 AD/ADRD 研究队列主要是白人,尽管临床和流行病学研究表明,黑人是受 AD/ADRD 影响最大的人群之一。仅使用白人队列不足以描述疾病和生活经历的异质性,而这些异质性可能会改变 AD/ADRD 的进程。美国国家老龄化研究所(NIA)呼吁在 AD/ADRD 研究中增加种族多样性。虽然科学家们正在努力实施 NIA 的计划,以建立更多样化的研究队列,但他们也在寻找机会考虑 AD/ADRD 研究中的种族问题。最近,科学家们提出了两种在 AD/ADRD 研究中纳入种族的方法:基于祖先的种族验证和基于种族的生物标志物检测结果调整。这两种方法都需要仔细研究它们如何影响 AD/ADRD 科学,特别是针对特定的研究目标和该领域的更广泛使命。如果这些研究方法不是以追求公平和正义为基础,那么它们引入 AD/ADRD 科学中的偏见可能会加剧或恶化 AD/ADRD 研究和护理中的差异。