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

协调 PCP 和患者参与阿尔茨海默病的研究工作：MyAlliance for Cognitive Health

• 批准号: 10406998
• 负责人: JEFFREY Murray BURNS
• 金额: $ 137.41万
• 依托单位: UNIVERSITY OF KANSAS MEDICAL CENTER
• 依托单位国家: 美国
• 财政年份: 2020
• 资助国家: 美国
• 起止时间: 2020-06-01 至 2024-03-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10406998
• 关键词: Advocacy; Advocate; African American; African American population; Alzheimer' s Disease; Alzheimer’s disease biomarker; Award; Caring; Chronic Care; Cities; Clinical; Cognitive; Communication; Communities; Community Health Aides; Community Networks; Community Outreach; Community Practice; Counseling; Data Management Resources; Dementia; Diagnosis; Education; Education and Outreach; Educational Curriculum; Ensure; Family; Future; Genetic; Genetic Variation; Health; Infrastructure; Investments; Kansas; Knowledge; Latino; Latino Population; Link; Marketing; Medicare; Minority; Mission; Modeling; Monoclonal Antibody R24; Observational Study; Participant; Patients; Persons; Population Heterogeneity; Prevention; Process; Registries; Reproducibility; Research; Risk Factors; Rural; Rural Health; Sampling; Services; Site; Social Work; Speed; Talents; Therapeutic Studies; Time; Training; Trust; Underrepresented Populations; Universities; Wichita; Work; clinical care; cohort; cost; data management; dementia care; ethnic difference; ethnic diversity; falls; improved; informatics infrastructure; innovation; novel strategies; operation; outreach; portability; prevent; programs; racial and ethnic; racial difference; racial diversity; recruit; rural area; rural dwellers; skills; social; socioeconomic diversity; study population; tool; treatment response

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.

抽象的 需要新的招募研究参与者的模型来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放缓的最大挑战之一 治疗和预防阿尔茨海默氏病 (AD) 的研究往往达不到研究人群的要求。 代表了概括试验结果所必需的遗传、民族、种族和社会经济多样性，同时 试验招募的速度直接影响完成研究的成本和时间。 随着当前和计划中试验的数量和规模急剧扩大，情况只会变得更糟。 堪萨斯大学阿尔茨海默病中心 (KU ADC; P30AG035982) 创建了 MyAlliance 认知健康 (MyAlliance) 加速参与研究并强调达到低水平 代表群体（URG：主要是非裔美国人、拉丁裔和农村居民）。 地区和堪萨斯州日益多元化（> 20% 的少数族裔）。 通过 1) PCP 网络吸引多元化人群的可复制策略，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，源自 PCP 网络中的患者），以及 3) 多元化的社区网络 利益相关者提供强有力的外展和教育。 MyAlliance 的持续价值是其改善所有患者及其家庭护理的临床使命 MyAlliance 将在社区实践中支持 PCP——强调服务于痴呆症的实践。 高比例的 URG – 与社会工作导航员一起为其提供慢性病护理管理服务 这一临床价值是确保 PCP 持续参与的动力。 维持网络以在社区中建立永久性的招聘基础设施。 R24 奖项将产生可移植到 AD 中心的新方法、内容和工具 网络及其他方面，以加强国家研究招募工作，并努力改变研究文化 通过联系、调整和吸引 PCP、患者和社区参与社区研究招募 利益相关者的研究工作。

项目成果

Impact of the COVID-19 Pandemic on Latino Families With Alzheimer Disease and Related Dementias: Qualitative Interviews With Family Caregivers and Primary Care Providers.

COVID-19 大流行对患有阿尔茨海默病和相关痴呆症的拉丁裔家庭的影响：对家庭护理人员和初级保健提供者的定性访谈。

• 发表时间: 2024-03-08
• 作者: Perales;Peltzer, Jill;Fracachan;Perez, G Adriana;Ramírez, Mariana;Greiner, K Allen;Burns, Jeffrey Murray
• 通讯作者: Burns, Jeffrey Murray

A Collaborative Approach to Dementia Inclusion in Social Work Education: The Dementia Intensive.

将痴呆症纳入社会工作教育的协作方法：痴呆症强化。

• 发表时间: 2023
• 影响因子: 1.3
• 作者: Niedens, Michelle;Yeager, Amy;Vidoni, Eric D;Barton, Kelli;Perales;Dealey, Rhonda Peterson;Quinn, Dory;Gage, L Ashley
• 通讯作者: Gage, L Ashley

Primary Care Provider Preferences on Dementia Training: A Qualitative Study.

初级保健提供者对痴呆症培训的偏好：一项定性研究。

• 发表时间: 2023
• 作者: Perales;Strube, Kelsey;Townley, Ryan;Niedens, Michelle;Arreaza, Hector;Zaudke, Jana;Burns, Jeffrey M
• 通讯作者: Burns, Jeffrey M

Patient Polypharmacy use Following a Multi-Disciplinary Dementia Care Program in a Memory Clinic: A Retrospective Cohort Study.

记忆诊所多学科痴呆症护理计划后患者的多种药物使用：一项回顾性队列研究。

• 发表时间: 2023
• 作者: Perales;Burkhardt, Crystal;Baker, Jordan;Cernik, Colin;Townley, Ryan;Niedens, Michelle;Burns, Jeffrey M;Mudaranthakam, Dinesh Pal
• 通讯作者: Mudaranthakam, Dinesh Pal

Recruitment methods and yield rates for a multisite clinical trial exploring risk reduction for Alzheimer's disease (rrAD).

探索降低阿尔茨海默病 (rrAD) 风险的多中心临床试验的招募方法和收益率。

• 发表时间: 2023
• 作者: Szabo;Hall, Tristyn;Vidoni, Eric D;Van Sciver, Angela;Sewell, Monica;Burns, Jeffrey M;Cullum, C Munro;Gahan, William P;Hynan, Linda S;Kerwin, Diana R;Rossetti, Heidi;Stowe, Ann M;Vongpatanasin, Wanpen;Zhu, David C;Zhang, Rong
• 通讯作者: Zhang, Rong