ALZHEIMER'S DISEASE PATIENT REGISTRY

这是一项关于建立一个全国性的老年痴呆症患者 登记处（ADPR）使用来自阿尔茨海默病中心的病例， 国家老龄化研究所。 《德班宣言和行动纲领》执行期间的具体目标 三年奖励期如下：1）收集基线数据， 来自各中心的数千名患者的统一随访数据; 2） 根据经验验证疾病标志物的一致性，特别是， 通过比较中心的诊断准确性; 3）完善标准， 通过对准备中的注册数据进行深入审查进行诊断和预后 为进一步研究按年龄分列的国家发病率和流行率模式， 性别、教育和其他人口因素; 4）构建个人资料， 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） 协调测量多个维度的仪器的比较， 患者状态和简化测试组合的相对效率 从中可以发展出简单、经济和易于应用的标准， 大规模使用; 6）取决于发现疾病进展的措施， 比较不同中心使用的患者护理策略; 7）培训 工人使用管理大型数据库的技术; 8） 为专门从事以下工作的中心提供流行病学和分析支持： 对尸检和活组织检查病例的研究，新的成像技术， 神经化学和免疫学探针，环境风险因素，以及 遗传因素 拟议的登记研究是I期或渐进式ADPR。 建筑物对 在各中心达成共识的过程中，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，并统计验证协会发现， 个别中心。 实现这些目标将使 有效的国家人口登记册， 发病率，建立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 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.