Aligning PCPs and Patients with Alzheimer's Research Efforts: MyAlliance for Cognitive Health

摘要 招募研究参与者的新模式需要支持当前和未来的试验。 招募足够多样化的研究参与者样本是减缓研究进展的最大挑战之一。 治疗和预防阿尔茨海默病（AD）的研究工作。研究人群往往缺乏 代表遗传，民族，种族和社会经济多样性，以概括试验结果， 试验招募的速度直接影响到完成研究的费用和时间。这些问题 随着目前和计划进行的审判的数量和规模急剧扩大，情况只会恶化。 堪萨斯大学阿尔茨海默病中心（KU ADC; P30 AG 035982）创建了MyAlliance， 认知健康（MyAlliance），以加快参与研究，并强调在 代表群体（URG：主要是非洲裔美国人，拉丁美洲人和农村居民）。堪萨斯城 地区和堪萨斯州的人口越来越多样化（>20%的少数民族）。MyAlliance是一个可持续且 通过1）PCP网络吸引多元化人群的可重复策略，以改善痴呆症护理 通过财务上可持续的慢性病护理管理计划，2）患者网络（MyAlliance 研究登记处，来自PCP网络中的患者），以及3）各种社区网络 利益攸关方提供强有力的外联和教育。 MyAlliance的持续价值在于其临床使命，即改善所有患者及其家属的护理 应对痴呆症MyAlliance将支持社区实践中的PCP-强调服务于 高比例的URG -与社会工作领航员提供慢性护理管理服务， 痴呆症患者这种临床价值是确保PCP随时间推移持续参与的引擎， 维持该网络，在社区建立永久的招聘基础设施。 此R24奖项将产生可移植到AD Center的新方法、内容和工具 网络和超越，以加强国家研究招聘工作，并努力改变文化， 通过联系、调整和吸引PCP、患者和社区，在社区进行研究招募 利益相关者的研究工作。

Abstract New models for recruiting research participants are required to support current and future trials. Recruiting adequately diverse samples of research participants is among the biggest challenges slowing research efforts to treat and prevent Alzheimer's disease (AD). Study populations often fall short in representing the genetic, ethnic, racial, and socioeconomic diversity necessary to generalize trial results while the speed of recruitment into trials directly impacts the cost and time to complete studies. These issues are only worsening as the number and size of current and planned trials have dramatically expanded. The University of Kansas Alzheimer's Disease Center (KU ADC; P30AG035982) created MyAlliance for Cognitive Health (MyAlliance) to accelerate participation in research and emphasize reaching under- represented groups (URG: predominantly African Americans, Latinos, and rural residents). The Kansas City region and the state of Kansas are increasingly diverse (>20% minority). MyAlliance is a sustainable and reproducible strategy for engaging a diverse population through 1) a PCP Network to improve dementia care through a financially-sustainable Chronic Care Management program, 2) a Patient Network (MyAlliance Research Registry, derived from patients in the PCP network), and 3) a Community Network of diverse stakeholders delivering robust outreach and education. The sustaining value of MyAlliance is its clinical mission to improve care for all patients and families dealing with dementia. MyAlliance will support PCPs in community practice – emphasizing practices serving a high proportion of URG – with social work Navigators to deliver Chronic Care Management services for their dementia patients. This clinical value is the engine to ensure consistent PCP engagement over time and sustain the network to create a permanent recruitment infrastructure in the community. This R24 award will result in new approaches, content, and tools that will be portable to the AD Center network and beyond to enhance national research recruitment efforts and work to change the culture of research recruitment in the community by linking, aligning, and engaging PCPs, patients, and community stakeholders with research efforts.