ALZHEIMER'S DISEASE PATIENT REGISTRY

这是一项开发全国阿尔茨海默病患者的提案 使用由以下机构建立的阿尔茨海默病中心病例登记(ADPR) 美国国家老龄研究所。发展政策审查的具体目标 三年获奖期如下：1)收集基线数据和 对这些中心的数千名患者进行统一的随访数据；2) 从经验上验证疾病标记物的一致性，特别是 通过中心比较诊断的准确性；3)完善诊断标准 通过深入审查准备中的登记数据进行诊断和预后 关于按年龄划分的全国发病率和流行率模式的未来研究， 性别、教育和其他人口因素；4)构建个人资料和 描述适用于全国患者的病程 从而为进行有效的临床试验奠定基础；5) 协调测量多种尺寸的仪器的比对 患者状况和简化测试电池的相对效率 它将演变为简单、经济和易于应用的标准 大规模使用；6)取决于找到疾病进展的测量方法，以 比较不同中心使用的病人护理策略；7)培训 工作人员使用管理大型数据库的技术；以及8) 为专门从事以下工作的中心提供流行病学和分析支持 对尸检和活检病例的研究，新的成像技术， 神经化学和免疫探针，环境风险因素，以及 遗传因素。 拟议的注册处是第一阶段或发展中的ADPR。建立在 在中心之间达成共识的过程中，ADPR将使用迭代分析 完善诊断标准，测试患者数据的充分性 未来的研究，并从统计上验证 个别中锋。这些目标的实现将使 有效的基于人口的国家登记能够监测国家 发病率，建立经经验验证的诊断标准 适用于前瞻性治疗试验，并设计研究 组织、服务结构、预防措施和控制 医疗费用。

This is a proposal to develop a national Alzheimer's Disease Patient Registry (ADPR) using cases from Alzheimer Centers established by the National Institute of Aging. The specific aims of the ADPR during the three year award period are as follows: 1) to collect baseline data and uniform follow-up data on several thousand patients from the centers; 2) to validate empirically the consistency of disease markers, particularly, the accuracy of diagnosis by comparison of centers; 3) to refine criteria for diagnosis and prognosis by intensive review of registry data in preparation for future studies of national patterns of incidence and prevalence by age, sex, education, and other demographic factors; 4) to construct profiles and delineate courses of disease that apply to patients throughout the country and thereby set the stage for conducting efficient clinical trials; 5) to coordinate the comparison of instruments measuring multiple dimensions of patient status and the relative efficiency of abbreviated test batteries from which would evolve simple, economic, and readily applied criteria for mass use; 6) contingent on finding measures of progression of illness, to compare strategies of patient care used by various centers; 7) to train workers to use the technology of managing large databases; and 8) to provide epidemiologic and analytic support to centers that specialize in the study of autopsied and biopsied cases, new imaging technologies, neurochemical and immunological probes, environmental risk factors, and genetic factors. The proposed Registry is a Phase I or evolutionary ADPR. Building on a process of consensus between centers, the ADPR will use iterative analyses to refine diagnostic criteria, to test the adequacy of patient data for future studies, and to statistically validate associations found by individual centers. Achievement of these goals will make possible an effective national population-based registry capable of monitoring national incidence rates, establishing empirically validated diagnostic criteria suitable for prospective therapeutic trials, and designing research on the oragnization, structure of services, preventive measures, and control of medical costs.