Fries J F
J Med Philos. 1984 May;9(2):161-80. doi: 10.1093/jmp/9.2.161.
Chronic diseases represent the major illness burden of developed nations. A chronic disease databank system consists of parallel longitudinal data sets from diverse locations describing the courses of thousands of patients with chronic illness over many years. Illustrated by ARAMIS (The American Rheumatism Association Medical Information System), such data resources facilitate analysis of long term health outcomes and the factors associated with particular outcomes. A model for clinical investigation of contemporary disease is presented, based on the overwhelming prevalence of chronic illness, the variability, complexity, and uniqueness of the individual patient course, the difficulties of traditional univariate reductionist approaches, and the time span required for study. In this model, data are systematically accrued and continually analyzed, and the data collected are gradually modified based upon evolving anticipation of future needs. The strategies underlying the development of ARAMIS are described, investigational results summarized, and future directions outlined.
慢性病是发达国家的主要疾病负担。慢性病数据库系统由来自不同地点的平行纵向数据集组成,这些数据集描述了数千名慢性病患者多年来的病程。以ARAMIS(美国风湿病协会医学信息系统)为例,此类数据资源有助于分析长期健康结果以及与特定结果相关的因素。基于慢性病的普遍流行、个体患者病程的变异性、复杂性和独特性、传统单变量还原论方法的困难以及研究所需的时间跨度,提出了一种当代疾病临床研究模型。在该模型中,数据被系统地积累并持续分析,收集到的数据会根据对未来需求的不断预期而逐步修改。描述了ARAMIS开发背后的策略,总结了研究结果,并概述了未来方向。