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阿尔茨海默病注册研究联盟:发展、数据库结构及部分研究结果

Consortium to establish a registry for Alzheimer's disease: development, database structure, and selected findings.

作者信息

Fillenbaum G G, Beekly D, Edland S D, Hughes J P, Heyman A, van Belle G

机构信息

Duke University Medical Center, Durham, NC, USA.

出版信息

Top Health Inf Manage. 1997 Aug;18(1):47-58.

Abstract

The Consortium to Establish a Registry for Alzheimer's Disease (CERAD) was funded in 1986 by the National Institute on Aging to develop standardized assessments for patients with Alzheimer's disease (AD). Since that time, CERAD has developed and evaluated clinical and neuropsychological test batteries, a neuroimaging protocol, and an assessment of the neuropathological findings of the brains of these patients at autopsy. Approximately 1,200 carefully screened patients with AD and 450 control subjects were evaluated using these instruments at 24 major medical centers around the United States. Annual follow-up observations of these subjects were made for up to eight years. Autopsy examinations of the brain were done in over half of the deceased cases and the clinical diagnosis of AD was confirmed in 85 percent of them. This article outlines the procedures used for identifying the clinical sites, the entry and annual evaluations of patients and control subjects, the collection and analysis of data at a central Methodology and Data Management Center, and evaluation of the CERAD measures. We also present selected data from the 50 or so peer-reviewed papers published to date, with particular emphasis on findings from African-American patients with AD, and related policy implications.

摘要

阿尔茨海默病注册协会(CERAD)于1986年由美国国立衰老研究所资助,旨在为阿尔茨海默病(AD)患者开发标准化评估方法。自那时以来,CERAD已开发并评估了临床和神经心理学测试组合、神经影像学方案,以及对这些患者尸检时大脑神经病理学发现的评估。在美国24家主要医疗中心,使用这些工具对约1200名经过仔细筛选的AD患者和450名对照受试者进行了评估。对这些受试者进行了长达八年的年度随访观察。超过一半的死亡病例进行了脑部尸检,其中85%的病例确诊为AD。本文概述了用于确定临床地点、患者和对照受试者的入组及年度评估、在中央方法学和数据管理中心进行数据收集和分析,以及对CERAD测量方法进行评估的程序。我们还展示了迄今为止发表的约50篇同行评审论文中的部分数据,特别强调了非裔美国AD患者的研究结果以及相关政策含义。

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