Accelerating diversity in Alzheimer's disease research by partnering with a community advisory board.
Accelerating diversity in Alzheimer's disease research by partnering with a community advisory board.
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DOI：
10.1002/trc2.12400
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发表时间：
2023-04
影响因子：
4.8
通讯作者：
Wang, Sophia
中科院分区：
文献类型：
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作者：
Pena-Garcia, Alex;Richards, Ralph;Richards, Mollie;Campbell, Christopher;Mosley, Hank;Asper, Joseph;Eliacin, Johanne;Polsinelli, Angelina;Apostolova, Liana;Hendrie, Hugh;Tackett, Andrew;Elliott, Caprice;Van Heiden, Sarah;Gao, Sujuan;Saykin, Andrew;Wang, Sophia
社区咨询委员会（CAB）和研究人员的合作伙伴关系提供了一个充满希望的机会，以加快入学人数不足的群体（URG）。我们概述了CAB和印第安纳州阿尔茨海默病研究中心（IADRC）的研究人员如何合作加速URG参与AD神经影像学研究的框架。CAB和IADRC的研究人员合作，通过社区和研究互动来增加CAB对URG研究注册的影响。社区互动包括CAB协作建立以URG为重点的社区组织网络，并与这些以URG为重点的组织合作举办IADRC外联和招聘活动。研究互动包括直接影响（咨询委员会成员称自己或密切接触者为参与者）和战略影响，主要是咨询委员会与研究人员合作，为机构间发展研究中心和附属研究制定和完善以城市资源小组为重点的外联和征聘战略，以增加城市资源小组的代表性。我们创建了一个数据库基础设施，以衡量这些相互作用如何影响URG研究入组。在2019年10月至2022年12月期间向IADRC提交的354项URG研究转介中，有267项转介是由CAB直接转介的（N = 36）或来自CAB成员组织和/或志愿参加的社区活动（N = 231）。在这267例转诊患者中，34例入组IADRC，2例入组印第安纳州大学纵向早发性AD研究（IU LEADS）。值得注意的是，这两项研究都要求潜在参与者愿意进行MRI和PET扫描。截至2022年12月，34名入组受试者中有30名接受了一致诊断;大多数认知正常（64.7%），其余患有轻度认知障碍（17.6%）或早期AD（2.9%）。IADRC CAB-研究人员伙伴关系对非裔美国人/黑人成年人参与AD神经影像学研究产生了可衡量的影响。未来的研究将需要测试这个概念模型是否适用于其他网站和其他URG。
Community advisory boards (CABs) and researcher partnerships present a promising opportunity to accelerate enrollment of underrepresented groups (URGs). We outline the framework for how the CAB and researchers at the Indiana Alzheimer's Disease Research Center (IADRC) partnered to accelerate URG participation in AD neuroimaging research. CAB and the IADRC researchers partnered to increase the CAB's impact on URG study enrollment through community and research interactions. Community interactions included the CAB collaboratively building a network of URG focused community organizations and collaborating with those URG‐focused organizations to host IADRC outreach and recruitment events. Research interactions included direct impact (CAB members referring themselves or close contacts as participants) and strategic impact, mainly by the CAB working with researchers to develop and refine URG focused outreach and recruitment strategies for IADRC and affiliated studies to increase URG representation. We created a database infrastructure to measure how these interactions impacted URG study enrollment. Out of the 354 URG research referrals made to the IADRC between October 2019 and December 2022, 267 referrals were directly referred by the CAB (N = 36) or from community events in which CAB members organized and/or volunteered at (N = 231). Out of these 267 referrals, 34 were enrolled in IADRC and 2 were enrolled in Indiana University Longitudinal Early Onset AD Study (IU LEADS). Of note, both studies require the prospective participants to be willing to do MRI and PET scans. As of December 2022, 30 out of the 34 enrolled participants have received a consensus diagnosis; the majority were cognitively normal (64.7%), with the remainder having mild cognitive impairment (17.6%) or early‐stage AD (2.9%). The IADRC CAB‐researcher partnership had a measurable impact on the enrollment of African American/Black adults in AD neuroimaging studies. Future studies will need to test whether this conceptual model works for other sites and for other URGs.