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.

推广，招聘和参与核心摘要 阿尔茨海默氏病（AD）正在进行科学和文化大革命。关于疾病的发现 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，以及 美国对国家阿尔茨海默氏症的计划有持续的承诺。建立了里程碑来实现 雄心勃勃的目标，包括转换对护理的交付以及到2025年发现的方法 有效治疗和预防疾病。基于基因和基于生物标志物的临床试验已启动 患有痴呆症的人，也是MCI阶段的人，甚至是“临床前”阶段。同时， 研究表明，AD和其他晚期之间存在重大异质性和重叠 神经退行性疾病，对AD和相关痴呆症的概念（AD/ADRD）表示赞赏。和 然而，渴望所有这些进步，所有这些知识，痴呆症及其家人的人仍然很难找到 体面的护理，必须应对有时造成的污名，并经历社会和经济差异。一个 Penn ADRC的主要重点是促进和传播这一革命性的研究 对AD/ADRD的了解，解释了该疾病的异质性，改善护理并解决污名 和差异。此重点为宾夕法尼亚州ADRC外展，招聘和 参与（矿石）核心：进步研究，促进公众理解，并促进更好的方法 患者，家庭和美国与广告/ADRD一起生活。我们将通过协作部分实现这一目标 使用行政核心和REC支持Penn ADRC员工的发展 专业人士的知识，吸引力以及与沟通，认知衰老，广告/ADRD相关的技能 这些疾病，护理和照料，污名以及多样性，公平和包容的阶段。与之合作 临床和行政核心以及社区合作伙伴，我们将开发和实施 有效的宣传和参与计划，以教育公众，与MCI和痴呆症的人们以及 照顾者和家庭关于广告/adrd，以及建立支持结构并促进研究 解决广告/adrd对福祉和自治构成的独特挑战。黑人或非裔美国人 社区将是这项工作的重点。我们还将与Penn ADRC调查人员及其合作 合作者制定策略和策略，以招募和保留广告/ADRD研究协议的主题， 包括临床试验。这项工作与我们的社区合作伙伴和临床，数据合作 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有一个 强调除遗传外，还强调收集衡量大脑健康社会决定者的数据的研究 AD/ADRD的材料和生物标志物。