Outreach, Recruitment and Engagement Core

外展、招聘和参与核心

• 批准号: 10264231
• 负责人: JASON H KARLAWISH
• 金额: $ 11.59万
• 依托单位: UNIVERSITY OF PENNSYLVANIA
• 依托单位国家: 美国
• 财政年份: 2021
• 资助国家: 美国
• 起止时间: 2021-08-15 至 2026-06-30
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10264231
• 关键词: Address; African American; Altruism; Alzheimer' s Disease; Alzheimer' s disease related dementia; Alzheimer’s disease biomarker; Americas; Attitude; Biological Markers; Caring; Clinical; Clinical Data; Clinical Trials; Cognitive aging; Collaborations; Communication; Communities; Data; Dementia; Dementia caregivers; Development; Diagnosis; Disease; Doctor of Medicine; Doctor of Philosophy; Education and Outreach; Effectiveness; Elderly; Family; Fostering; Functional disorder; Genes; Genetic Markers; Genetic Materials; Genomics; Goals; Heterogeneity; Internships; Knowledge; Language; Laws; Learning; Measures; Medicine; Memory; Methods; Mission; Modeling; Neurodegenerative Disorders; Outreach Research; Participant; Patients; Pennsylvania; Personal Satisfaction; Persons; Philadelphia; Physicians; Population; Protocols documentation; Public Health; Public Policy; Registered nurse; Research; Research Ethics; Research Personnel; Risk; Science; Shapes; Structure; Technology; Time; Training; Translating; Trust; Universities; Work; base; brain health; care delivery; caregiving; cohort; community organizations; comorbidity; data management; disease heterogeneity; diversity and equity; diversity and inclusion; economic disparity; education research; evidence base; experience; gene discovery; improved; innovation; neuroimaging marker; neuropathology; next generation; outreach; pre-clinical; prevent; programs; recruit; skills; social determinants; social disparities; social health determinants; social stigma

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.

外联、招聘和参与核心摘要 阿尔茨海默病（AD）正在经历一场科学和文化革命。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如何诊断和治疗它， 美国一直致力于制定一项全国性的老年痴呆症计划。军事行动已经到位， 雄心勃勃的目标，包括转变护理服务，到2025年， 有效地治疗和预防疾病。基于基因和生物标志物的临床试验已经启动， 患有痴呆症的人，以及处于MCI阶段甚至“临床前”阶段的人。与此同时， 研究表明，AD和其他晚年疾病之间存在很大的异质性和重叠， 神经退行性疾病，从而证实了AD和相关痴呆（AD/ADRD）的概念。和 然而，尽管有了这些进步，所有这些知识，痴呆症患者和他们的家人仍然很难找到 获得体面护理的妇女必须科普有时令人崩溃的耻辱感，并经历社会和经济差距。一 宾夕法尼亚州ADRC的主要重点是促进和传播推进这一革命性研究的研究 了解AD/ADRD，解释疾病的异质性，改善护理，并解决耻辱问题 和差异。这一重点通知宾夕法尼亚州ADRC的外联，招聘和 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合作，支持宾夕法尼亚州ADRC工作人员的发展， 专业人员的知识，态度和技能相关的通信，认知老化，AD/ADRD， 这些疾病的阶段，护理和康复，耻辱，多样性，公平和包容。使用 临床和行政核心和社区合作伙伴，我们将制定和实施 有效的外展和参与计划，以教育公众，患有MCI和痴呆症的人， 护理人员和家庭关于AD/ADRD，以及建立支持结构和促进研究， 解决AD/ADRD对福祉和自主性构成的独特挑战。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州ADRC调查人员及其 合作者制定策略和战术，以招募和保留AD/ADRD研究方案的受试者， 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，神经病理学，基因组学，神经影像学和生物标志物核心，有一个 强调研究收集数据，测量除了遗传因素之外的大脑健康的社会决定因素， AD/ADRD的材料和生物标志物。