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Characterizing Demographic, Racial, and Geographic Diversity in Dementia Research: A Systematic Review.
JAMA Neurology ( IF 29.0 ) Pub Date : 2021-10-01 , DOI: 10.1001/jamaneurol.2021.2943
Sanne S Mooldijk 1 , Silvan Licher 1 , Frank J Wolters 1, 2
Affiliation  

Importance For informed decision making on diagnosis and treatment of dementia, physicians and their patients rely on the generalizability of evidence from published studies to clinical practice. However, it is uncertain whether everyday care of elderly patients with dementia is sufficiently captured in contemporary research. Objective To systematically review contemporary dementia research in terms of study and patient characteristics in order to assess generalizability of research findings. Evidence Review PubMed was searched for dementia studies published in the top 100 journals in the fields of neurology and neuroscience, geriatrics, psychiatry, and general medicine between September 1, 2018, and August 31, 2019. Two reviewers extracted study characteristics, including setting, number of participants, age at diagnosis, and use of biomarkers. Findings Among 513 identified studies, 211 (41%) included fewer than 50 individuals with dementia and were excluded. The remaining 302 studies included a median (interquartile range) of 214 patients (98-628) with a mean (SD) age at diagnosis of 74.1 years (8.0). Age at diagnosis differed with study setting. Patients in the 180 clinic-based studies had a mean (SD) age of 71.8 (6.4) years at time of diagnosis compared with 80.6 (4.7) years among patients in the 79 population-based studies (mean difference, 8.8 years; 95% CI, 7.3-10.2). Use of magnetic resonance imaging, positron emission tomography imaging, and cerebrospinal fluid imaging was mostly done in clinic-based studies (80% to 96%) and consequently in relatively young patients (mean [SD] age, 71.6 [5.1] years). A longitudinal design was more common in population-based studies than in clinic-based studies (82 % vs 40%). Most studies originated from North America and Europe (89%), including almost exclusively White participants (among 74 studies [22%] reporting on ethnicity: median [interquartile range], 89% [78-97]). The 3 most studied cohorts represented 21% of all included study populations. Conclusions and Relevance Contemporary dementia research is limited in terms of racial and geographic diversity and draws largely from clinic-based populations with relatively young patients. Greater inclusivity and deeper phenotyping in unselected cohorts could improve generalizability as well as diagnosis and development of effective treatments for all patients with dementia.

中文翻译:

表征痴呆症研究中的人口、种族和地理多样性:系统评价。

结果 在 513 项已确定的研究中,211 项(41%)包括少于 50 名痴呆症患者并被排除在外。其余 302 项研究包括 214 名患者 (98-628) 的中位数(四分位距),诊断时的平均 (SD) 年龄为 74.1 岁 (8.0)。诊断年龄因研究环境而异。180 项临床研究中的患者在诊断时的平均 (SD) 年龄为 71.8 (6.4) 岁,而 79 项基于人群的研究中患者的平均 (SD) 年龄为 80.6 (4.7) 岁(平均差异为 8.8 岁;95% CI,7.3-10.2)。磁共振成像、正电子发射断层扫描成像和脑脊液成像的使用主要在临床研究中进行(80% 到 96%),因此在相对年轻的患者中进行(平均 [SD] 年龄,71.6 [5.1] 岁)。纵向设计在基于人群的研究中比在基于临床的研究中更常见(82% vs 40%)。大多数研究来自北美和欧洲(89%),包括几乎全部是白人参与者(在 74 项研究 [22%] 报告种族:中位数 [四分位距],89% [78-97])。研究最多的 3 个队列占所有纳入研究人群的 21%。结论和相关性当代痴呆症研究在种族和地理多样性方面受到限制,并且主要来自具有相对年轻患者的临床人群。在未选择的队列中更大的包容性和更深入的表型可以提高所有痴呆患者的普遍性以及有效治疗的诊断和开发。大多数研究来自北美和欧洲(89%),包括几乎全部是白人参与者(在 74 项研究 [22%] 报告种族:中位数 [四分位距],89% [78-97])。研究最多的 3 个队列占所有纳入研究人群的 21%。结论和相关性当代痴呆症研究在种族和地理多样性方面受到限制,并且主要来自具有相对年轻患者的临床人群。在未选择的队列中更大的包容性和更深入的表型可以提高所有痴呆患者的普遍性以及有效治疗的诊断和开发。大多数研究来自北美和欧洲(89%),包括几乎全部是白人参与者(在 74 项研究 [22%] 报告种族:中位数 [四分位距],89% [78-97])。研究最多的 3 个队列占所有纳入研究人群的 21%。结论和相关性当代痴呆症研究在种族和地理多样性方面受到限制,并且主要来自具有相对年轻患者的临床人群。在未选择的队列中更大的包容性和更深入的表型可以提高所有痴呆患者的普遍性以及有效治疗的诊断和开发。研究最多的 3 个队列占所有纳入研究人群的 21%。结论和相关性当代痴呆症研究在种族和地理多样性方面受到限制,并且主要来自具有相对年轻患者的临床人群。在未选择的队列中更大的包容性和更深入的表型可以提高所有痴呆患者的普遍性以及有效治疗的诊断和开发。研究最多的 3 个队列占所有纳入研究人群的 21%。结论和相关性当代痴呆症研究在种族和地理多样性方面受到限制,并且主要来自具有相对年轻患者的临床人群。在未选择的队列中更大的包容性和更深入的表型可以提高所有痴呆患者的普遍性以及有效治疗的诊断和开发。
更新日期:2021-09-07
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