Stock Miriam R, Ceïde Mirnova E, Lounsbury David W, Zwerling Jessica
Medical Program, Albert Einstein College of Medicine, Bronx, NY, USA.
Department of Psychiatry & Behavioral Sciences, Albert Einstein College of Medicine, Montefiore Health System, Bronx, NY, USA.
J Clin Transl Sci. 2022 Apr 11;6(1):e73. doi: 10.1017/cts.2022.388. eCollection 2022.
Despite the disproportionate burden of Alzheimer's disease in older adults of color, the scientific community continues to grapple with underrepresentation of racial and ethnic minorities in clinical research. Our Center of Excellence for Alzheimer's Disease (CEAD) collaborated with a local community partner to conduct community engagement (CE) studios to effectively involve our community of diverse older adults in the early planning stages of a clinical trial. Given the COVID-19 pandemic, the in-person studio format was adapted to allow for virtual, real-time participation. Our objective is to describe the process and feasibility of conducting virtual CE studios in an older adult population. Ninety percent of participants were non-Hispanic Black community-dwelling woman aged 60 years and older. The overall background and proposed clinical trial design was presented to the participants who then made recommendations regarding potential recruitment strategies, the use of culturally relevant language to describe the study, and logistical recommendations to improve participation and retention among community members. Our CEAD successfully conducted virtual CE studios during the COVID-19 pandemic, by partnering with a community-based organization, to engage community stakeholders about clinical trial design. CEADs are in a unique position to implement CE studios to better support patient access to clinical trials.
尽管阿尔茨海默病在有色人种老年人中造成了不成比例的负担,但科学界仍在努力应对临床研究中种族和少数民族代表性不足的问题。我们的阿尔茨海默病卓越中心(CEAD)与当地社区合作伙伴合作,开展社区参与(CE)工作室,以便在临床试验的早期规划阶段有效地让我们多样化的老年人群体参与进来。鉴于新冠疫情,面对面工作室形式被调整为允许虚拟实时参与。我们的目标是描述在老年人群体中开展虚拟CE工作室的过程和可行性。90%的参与者是60岁及以上居住在社区的非西班牙裔黑人女性。向参与者介绍了总体背景和拟议的临床试验设计,然后他们就潜在的招募策略、使用具有文化相关性的语言描述研究以及提高社区成员参与度和留存率的后勤建议提出了意见。我们的CEAD在新冠疫情期间通过与一个社区组织合作,成功开展了虚拟CE工作室,让社区利益相关者参与临床试验设计。CEAD处于一个独特的位置,可以实施CE工作室,以更好地支持患者参与临床试验。