ALZHEIMER'S DISEASE PATIENT REGISTRY

这项建议的目的是建立一个登记册， 关于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）是一个独特的 基于人口的数据资源，可提供费率并阐明风险 阿尔茨海默病的影响因素和结果。 该资源由以下部分组成 明尼苏达州奥姆斯特德县所有居民的医疗记录。 一项试点研究表明，该数据库将在一个极好的 作为流行病学数据的登记和培训设施 关于老年痴呆症的发病率、趋势、患病率和结果 疾病和其他特定形式的痴呆症。 是 他建议从1960年到1984年期间获得这些数据， 预计痴呆症患者约1,050例，其中包括近650例 阿尔茨海默氏症，将被确定为182，000人年， 在这段时间里，该县的老年人口中有代表性。 除了上述描述性流行病学研究外， 根据个案记录的审查，我们建议进行两类分析， 流行病学研究：首先，痴呆危险因素的研究 疾病，使用有效和有代表性的控制方法， 从该人群的整个病历数据库中选择;以及 第二，对奥姆斯特德县居民的有限前瞻性研究， 解决后勤问题，并强调开发和测试 筛选程序和测试程序的评估， 危险因素 也有机会比较人口统计学 县人群中阿尔茨海默病的临床特征 （总病例确定）与大型马约诊所转诊病例 实践，这应该有助于确定患者选择偏倚和程度 与转诊中心使用病例系列相关的失真。 这一建议还涉及到地方和 “国家”登记册、各种数据收集方法以及 每种方法的优点和缺点。

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.