Outreach, Recruitment and Engagement Core

外展、招聘和参与核心摘要 阿尔茨海默病(AD)正在经历一场科学文化革命。关于这种疾病的发现 病理生理学正在改变我们对AD的理解以及临床医生诊断和治疗它的方式，以及 美国一直致力于一项全国性的阿尔茨海默氏症计划。里程碑已经到位，以实现 雄心勃勃的目标，包括提供护理的转型，以及到2025年发现 有效治疗和预防该病。基于基因和生物标记物的临床试验已经启动 痴呆症患者，以及处于MCI阶段甚至“临床前”阶段的患者。同时， 研究表明，阿尔茨海默病和其他老年人之间存在着很大的异质性和重叠性 神经退行性疾病，支持阿尔茨海默病和相关痴呆(AD/ADRD)的概念。和 然而，尽管所有这些进展，所有这些知识，痴呆症患者和他们的家人仍然难以找到 体面的照顾，必须应对有时令人震惊的耻辱，并经历社会和经济差距。一个 宾夕法尼亚大学ADRC的主要重点是促进和传播推动这一革命性进展的研究 了解AD/ADRD，解释疾病的异质性，改善护理，并解决污名问题 和差距。这一重点为宾夕法尼亚民主与发展中心的外联、招募和 参与(ORE)核心：推进研究，促进公众理解，并促进更好的方法 患者、家庭和美国与AD/ADRD一起生活。我们将通过合作部分实现这一目标 与行政核心和REC一起支持宾州ADRC工作人员的发展和 专业人员与通信、认知老化、AD/ADRD、 这些疾病的不同阶段、护理和照料、污名、多样性、公平和包容。使用 临床和行政核心以及社区合作伙伴，我们将开发和实施 有效的外展和参与计划，以教育公众、MCI患者和痴呆症患者，以及 护理人员和家庭了解AD/ADRD，以及建立支持结构和促进研究 应对AD/ADRD对福祉和自主性构成的明显挑战。黑人或非裔美国人 社区将是这项工作的重点。我们还将与宾夕法尼亚大学ADRC调查人员和他们的 合作者制定战略和战术，为AD/ADRD研究方案招募和保留受试者， 包括临床试验。这项工作，与我们的社区合作伙伴和临床，数据 管理和统计学、神经病理学、基因组学、神经成像和生物标志物核心 重视研究以收集数据，除基因外，还衡量大脑健康的社会决定因素 AD/ADRD的物质和生物标志物。

Outreach, Recruitment and Engagement Core Summary Alzheimer’s disease (AD) is undergoing a scientific and cultural revolution. Discoveries about the disease’s pathophysiology are transforming our understanding of AD as well as how clinicians diagnose and treat it, and the US has a sustained commitment to a national Alzheimer’s plan. Milestones are in place to achieve ambitious goals that include transformations to the delivery of care and, by 2025, the discovery of methods to effectively treat and prevent the disease. Gene and biomarker-based clinical trials have been launched for persons with dementia, and also those in the MCI stage and even the “preclinical” stage. At the same time, research shows there is substantial heterogeneity within and overlap between AD and other late-life neurodegenerative diseases, giving credence to the concept of AD and related dementias (AD/ADRD). And yet, despite all this progress, all this knowledge, persons with dementia and their families still struggle to find decent care, must cope with sometimes crushing stigma, and experience social and economic disparities. A major focus of the Penn ADRC is to promote and disseminate research that advances this revolutionary understanding of AD/ADRD, explains the heterogeneity of the disease, improves care, and addresses stigma and disparities. This focus informs the overarching goals of the Penn ADRC’s Outreach, Recruitment and Engagement (ORE) Core: to advance research, to promote public understanding, and to foster better ways for patients, families, and America to live with AD/ADRD. We will achieve this goal in part through collaboration with the Administrative Core and REC to support the development of Penn ADRC staff and professionals’ knowledge, attitudes, and skills related to communications, cognitive aging, AD/ADRD, the stages of these diseases, care and caregiving, stigma, and diversity, equity, and inclusion. Working with the Clinical and Administrative Cores and community partners, we will develop and implement effective outreach and engagement programs to educate the public, people living with MCI and dementia, and caregivers and families about AD/ADRD, as well as to build support structures and promote research that address the distinct challenges AD/ADRD poses to well-being and autonomy. The Black or African-American community will be an emphasis of this work. We will also work with Penn ADRC investigators and their collaborators to develop strategies and tactics to recruit and retain subjects for AD/ADRD research protocols, including clinical trials. This work, in collaboration with our community partners and the Clinical, Data Management and Statistical, Neuropathology, Genomics, Neuroimaging, and Biomarker Cores, has an emphasis on research to collect data measuring the social determinants of brain health in addition to genetic material and biomarkers of AD/ADRD.