Outreach, Recruitment and Engagement Core

点击翻译按钮获取中文摘要

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.