MICHIGAN ALZHEIMER?S DISEASE RESEARCH CENTER D(LONGITUDINAL COHORT) D MINORITY S

这个子项目是利用由NIH/NCRR资助的中心拨款提供的资源的许多研究子项目之一。子项目和调查员(PI)可能从另一个NIH来源获得了主要资金，因此可能会出现在其他CRISE条目中。列出的机构是针对中心的，而不一定是针对调查员的机构。这项研究是为了更多地了解阿尔茨海默病和相关疾病患者出现的症状类型。这项研究是对密歇根大学神经病学诊所正在进行的一项相同研究的补充。这项研究是在伊普西兰蒂卫星上进行的，目的是接触到代表性不足的少数民族的目标人群。这项研究的参与者不必改变他们的常规医疗护理。通过观察症状随时间的变化，我们希望更多地了解特定症状何时以及为什么会出现。被邀请参加这项研究的个人总体健康状况良好，并患有简单的阿尔茨海默病或其他可能影响记忆或思维能力的相关疾病。一旦参与者登记参加这项研究，他或她将每六个月在伊普西兰蒂卫星进行一次检查。参与者还将接受一年一次的记忆测试。如果参与者不能再回来探视，研究人员将通过电话联系参与者或参与者的家人，询问参与者的健康状况和疾病进展情况。这些联系将在参与者的余生中继续存在，或者直到参与者退出研究。只要有可能，检查程序将与常规医疗保健所需的检查同时进行。然而，如果不需要常规的临床护理，参与者将被要求完成一次仅限研究的访问。作为这项研究的一部分，还将审查常规阿尔茨海默氏症护理的医疗记录。来自常规临床护理和研究访问的信息将存储在密歇根大学的数据库中。这些数据将以三种方式使用：首先，根据知情同意书点名的调查人员可以访问他们在探视之前看到的参与者的相关数据，以监测参与者的进展情况，并为他们的临床评估做准备。其次，IRB和执行委员会批准的单独研究项目可以使用数据进行痴呆症研究。根据HIPAA的规定，只会向核准的单独项目提供最低限度的必要数据。第三，这些数据还将存储在国家阿尔茨海默氏症协调中心的国家数据库中，该中心是美国国立卫生研究院资助的中心。进入NACC的数据不包含姓名、医疗记录号或社会保险

This subproject is one of many research subprojects utilizing the resources provided by a Center grant funded by NIH/NCRR. The subproject and investigator (PI) may have received primary funding from another NIH source, and thus could be represented in other CRISP entries. The institution listed is for the Center, which is not necessarily the institution for the investigator. This study is being performed to learn more about the types of symptoms that develop in patients with Alzheimer's disease and related disorders. This study is a complement to an identical study being conducted at the University of Michigan Neurology Clinic. This study is conducted at the Ypsilanti Satellite with a goal of reaching target populations of underrepresented minorities. Participants in the study do not have to change their regular medical care. By observing how symptoms change over time, we hope to learn more about when and why particular symptoms develop. Individuals invited to enroll in this study are in good general health and have uncomplicated Alzheimer's disease or another related disorder that can affect memory or thinking ability. Once a participant enrolls in the study, he or she will be examined every six months at the Ypsilanti Satellite. Participants will also be given memory testing once a year. If a participant is no longer able to return for visits, study staff will contact the participant or participant's family by telephone to ask questions about the participant's health and progression of illness. These contacts will continue throughout the rest of the participant's life or until the participant withdraws from the study. Whenever possible, study procedures will occur at the same time as examinations required for regular medical care. However, if no regular clinical care is needed, participants will be asked to complete a 'study only' visit. As part of the study, medical records from regular Alzheimer's care will also be reviewed. Information from regular clinical care and study visits will be stored in a database at the University of Michigan. This data will be used in three ways: First, investigators named on the informed consent may access relevant data for participants they see prior to visits in order to monitor a participant's progression and prepare for their clinical evaluation. Second, separate research projects that are approved by the IRB and the Executive Committee may use data for research on dementia. In accordance with HIPAA, only the minimum necessary data would ever be provided to an approved separate project. Third, the data will also be stored in a national database at the National Alzheimer's Coordinating Center, a National Institutes of Health-funded Center. The data that goes to the NACC does not contain names, medical record numbers, or social security