Core E: Outreach, Recruitment and Education Core

摘要，核心E 外展、保留和教育核心（OREC）的主要目标是识别、招募、注册和保留 患者（某些诊断类型和种族/民族背景）和健康对照进入斯坦福大学 ADRC。我们的目标是轻度阿尔茨海默氏痴呆（AD）、遗忘型轻度认知障碍（MCI）、 轻度至中度帕金森病（PD），不伴MCI或痴呆; PD伴MCI;路易体痴呆 (DLB)不超过轻度痴呆严重程度和轻度至中度帕金森综合征的患者，以及 满足中心特定研究需求所需的其他疾病;以及年龄相当的老年人， 认知障碍或帕金森症。我们的目标是从这些患者中招募20%的西班牙裔/拉丁裔患者， 在这个项目的生命周期中的诊断类别。我们将开始招募美国印第安人长老， 第三年，他们的目标是新入学人数的5%。将通过以下方式促进实现这一主要目标： 与学术界和社区合作伙伴（例如，斯坦福大学 老年教育中心;帕洛阿尔托医学基金会;阿尔茨海默氏症协会;美国帕金森 疾病协会;和圣克拉拉谷印第安人健康中心）。我们的努力从照顾者开始 谁将被招募与病人，参加教育和减压计划，将不同 根据诊断和/种族/语言因素。他们将被介绍到Fotonovelas等工具， 网络小说，这是可用于帮助西班牙裔/拉丁裔家庭了解痴呆症，并处理 与抑郁症有关的压力。此外，我们还计划对土著卫生工作者进行病例调查培训 方法和痴呆症的筛查。OREC的其他目标包括： 我们的社区合作伙伴的能力;为医学生，居民， 和研究员，以及医疗和专职卫生专业人员谁与AD，MCI，PD和 其他有针对性的诊断类别和家庭（特别是西班牙裔/拉丁裔和美洲印第安人）;以及 与其他核心（行政、临床、神经病理学和生物统计学）合作， 中心招聘和保留目标。评估我们在实现这些目标方面的有效性， 通过为该核心开发的逻辑模型方法，其中包括测量小学、中学和 第三级成果，并使用结合定量和定性方法的方法。采取 这些方法和措施将为指导未来的核心方向提供丰富的数据。二次 目标包括对西班牙裔/拉丁裔和美洲印第安人患者进行定性研究， 护理人员了解促进者和充分参与中心的障碍，强调文化- 基于对尸检/大脑捐赠的态度，并获得指导未来研究的洞察力。此外，本发明还提供了一种方法， 将收集护理人员问卷数据，以评估抑郁症状和感知负担， 更好地理解我们正在研究的不同群体之间的差异。

SUMMARY, Core E The primary goal of the Outreach, Retention and Education Core (OREC) is to identify, recruit, enroll, and retain patients (of certain diagnostic types and racial/ethnic backgrounds) and healthy controls into the Stanford ADRC. We target patients with mild Alzheimer s dementia (AD); amnestic Mild Cognitive Impairment (MCI); mild-to-moderate Parkinson s disease (PD) without MCI or dementia; PD with MCI; dementia with Lewy bodies (DLB) of no greater than mild dementia severity and mild-to-moderate parkinsonism, as well as patients with other disorders as needed to fill specific research needs of the Center; and age-equivalent older adults without cognitive impairment or parkinsonism. We are targeting 20% enrollment of Hispanic/Latino patients from these diagnostic categories over the life of this project. We will begin recruitment of American Indian elders in the third year with their target being 5% of total new enrollment. Fulfillment of this primary aim will be facilitated by use of innovative strategies, in collaboration with academic and community-based partners (e.g., Stanford Geriatric Education Center; Palo Alto Medical Foundation; Alzheimer s Association; American Parkinson Disease Association; and the Indian Health Center of Santa Clara Valley). Our efforts start with the caregiver who will be recruited with the patient, to participate in educational and stress reducing programs that will vary according to diagnosis and /ethnic/linguistic factors. They will be introduced to tools such as Fotonovelas and webnovelas, which are available to assist Hispanic/Latino families to understand the dementias and to deal with caregiver-related stress. In addition, we plan to train Promotoras (indigenous health workers) in case-finding methods and screening for dementia. Additional OREC aims include: to build and strengthen research capacity of our community-based partners; to provide state-of-the-art training to medical students, residents, and Fellows, as well as medical and allied health professionals who work with patients with AD, MCI, PD and other targeted diagnostic categories and families (particularly Hispanic/Latino and American Indian); and to collaborate with other Cores (Admninistrative, Clinical, Neuropathology, and Biostatistics) to further overall Center recruitment and retention goals. Evaluation of our effectiveness at reaching these aims will be guided by a Logic Model approach developed for this Core, which includes measurement of primary, secondary and tertiary outcomes and uses approaches that incorporate both quantitative and qualitative methods. Taken together, these methods and measures will provide rich data for guiding future Core directions. Secondary aims include conducting qualitative research with Hispanic/Latino and American Indian patients and caregivers to understand facilitators and barriers to full participation in the Center, emphasizing culturally - based attitudes towards autopsy/ brain donation and gaining insight to guide future research. In addition, caregiver questionnaire data will be collected to assess depressive symptoms and perceived burden, to understand better how the impact of caregiving may differ across the different groups we are studying.