ALZHEIMER'S DISEASE PATIENT REGISTRY

阿尔茨海默病患者登记处

• 批准号: 3546246
• 负责人: JACOB A BRODY
• 金额: $ 54.2万
• 依托单位: UNIVERSITY OF ILLINOIS AT CHICAGO
• 依托单位国家: 美国
• 财政年份: 1986
• 资助国家: 美国
• 起止时间: 1986-09-30 至 1989-12-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/3546246
• 关键词: Alzheimer's disease; brain disorder diagnosis; data collection; disease /disorder prevention /control; disease /disorder proneness /risk; education; gender difference; health care cost /financing; health care referral /consultation; health care service planning; immunologic assay /test; longitudinal human study; mass screening; meeting /conference /symposium; mental health epidemiology; neurochemistry; neuropsychological tests; pathology; patient /disease registry; patient care; prognosis; racial /ethnic difference; sign /symptom

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.

这是开发全国阿尔茨海默氏病患者的建议 注册表（ADPR）使用来自阿尔茨海默氏症中心的案件 国家老化研究所。 ADPR在 三年奖励期如下：1）收集基线数据和 来自中心的数千名患者的统一随访数据； 2）到 从经验上验证疾病标记的一致性，特别是 通过比较中心的诊断精度； 3）完善标准 通过对注册表数据进行密集审查的诊断和预后 为了将来对按年龄划分的民族发病率和患病率的民族模式的研究， 性别，教育和其他人口因素； 4）构建配置文件和 描述适用于全国患者的疾病课程 从而为进行有效的临床试验奠定了基础； 5）到 协调测量多个维度的仪器的比较 患者状态和缩写测试电池的相对效率 从中可以发展简单，经济和容易应用的标准 大量使用； 6）取决于寻找疾病进展的措施， 比较各个中心使用的患者护理策略； 7）训练 工人使用管理大型数据库的技术；和8）到 向专门研究的中心提供流行病学和分析支持 研究尸检和活检的研究，新成像技术， 神经化学和免疫学探针，环境风险因素以及 遗传因素。 拟议的注册表是I期或进化ADPR。 建立在 中心之间共识的过程，ADPR将使用迭代分析 要完善诊断标准，以测试患者数据的充分性 未来的研究，并在统计上验证由 个别中心。 实现这些目标将成为可能 有效的国家人口注册表能够监视国家 发病率，建立经验验证的诊断标准 适用于前瞻性治疗试验，并设计有关 oragnization，服务结构，预防措施和控制 医疗费用。