ALZHEIMER'S DISEASE PATIENT REGISTRY

这项建议的目的是建立一个登记处，以便收集 阿尔茨海默病和其他痴呆症的流行病学数据 为收集此类数据的人员提供培训设施。 罗切斯特(明尼苏达州)流行病学项目(REPP)是一项独特的 基于人口的数据资源，可提供费率并明确风险 阿尔茨海默病的因素和结果。此资源由以下内容组成 居住在明尼苏达州奥姆斯特德县的所有人的医疗记录。 一项初步研究表明，这个数据库将发挥极好的作用。 作为流行病学数据的登记和培训设施 关于阿尔茨海默氏症的发病率、趋势、患病率和结局 疾病和其他特定形式的痴呆症在这个人群中。它是 提议获得1960年至1984年期间的这类数据，它 预计约有1,050例痴呆症患者，其中包括近650例 阿尔茨海默病，将被确定为182,000人年 在这段时间内，在该县的老年人口中具有代表性。 除上述描述性流行病学研究外 基于案例回顾，我们建议进行两种类型的分析 流行病学研究：第一，痴呆症危险因素研究 疾病，使用有效和有代表性的控制方法 从该人群的整个医疗记录数据库中进行选择；以及 其次，对奥姆斯特县居民进行的有限前瞻性研究将 解决物流问题，并强调开发和测试 筛查程序和评估检测程序和疑似 风险因素。也有机会比较人口统计数据 阿尔茨海默病在县级人群中的临床特征 (总病例确定)与梅奥诊所大型转诊的病例 实践，这应该有助于确定患者选择的偏见和程度 在转诊中心使用案件系列造成的扭曲。 这项建议还解决了地方和地方的优点问题。 “国家”登记册、各种数据收集方法和 每种方法的优缺点。

The purpose of this proposal is to develop a registry for the collection of epidemiological data on Alzheimer's disease and other dementias and to provide training facilities for personnel in the collection of such data. The Rochester (Minnesota) Epidemiologic Program Project (REPP) is a unique population-based data resource which can provide rates and clarify risk factors and outcome for Alzheimer's disease. This resource is comprised of the medical records of all persons residing in Olmsted County, Minnesota. A pilot study has demonstrated that this data bank will serve in a superb fashion as a registry and training facility for epidemiologic data concerning the incidence, trend, prevalence and outcome of Alzheimer's disease and other specific forms of dementia in this population. It is proposed that such data be obtained for the period 1960 through 1984 and it is expected that about 1,050 cases of dementia, including nearly 650 cases of Alzheimer's disease, will be identified for the 182,000 person-years represented in the elderly population of the county over that time span. In addition to the above-mentioned descriptive epidemiological studies based on case records review, we propose to conduct two types of analytical epidemiologic studies: first, research into risk factors for dementing illnesses, using an efficient and representative method of control selection from the entire medical record data bank for this population; and second, a limited prospective study of Olmsted County residents which will address logistic issues and emphasize the development and testing of screening procedures and an assessment of test procedures and suspected risk factors. There is also the opportunity of comparing the demographic and clinical features of Alzheimer's disease in the County population (total case ascertainment) with the cases in the large Mayo Clinic referral practice, which should help identify patient selection bias and the extent of distortion associated with the use of case series in referral centers. This proposal also addresses the question of the merits of local and "national" registries, various methods of data collection, and the advantages and disadvantages of each method.