维吉尼亚记忆计划:使用健康大脑倡议路线图设计一个全州范围的痴呆登记

IF 13 1区 医学 Q1 CLINICAL NEUROLOGY
Annie Rhodes, Ashley Staton, Evan French, Andrea Price, Brian Battle, Catherine MacDonald, Kimberly Ivey, Faika Zanjani, Rachel Coney, Melicent Miller, Meghan Farkas, Lana Sargent, Daniel Bluestein
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引用次数: 0

摘要

简介弗吉尼亚记忆项目(VMP)是一项针对阿尔茨海默病及相关疾病(ADRD)和其他神经退行性疾病的全州流行病学登记项目。该项目旨在利用美国疾病控制中心(CDC)的健康大脑计划(HBI)路线图,为痴呆症研究、政策和护理提供支持。方法为了获取全面的数据,VMP 利用弗吉尼亚州的全付费者索赔数据库(APCD)整合了自我注册和自动注册。结果弗吉尼亚州在 2024 年的议会会议上成功地将 VMP 编入法典。讨论VMP 通过将传统的登记功能与社区参与和劳动力发展相结合,展示了一种新型的阿尔茨海默病及相关疾病(ADRD)监测方法。未来的工作重点将是增加注册人数,特别是代表性不足的群体,以加强弗吉尼亚州以数据为导向的痴呆症政策和护理。收集数据并确定当前痴呆症和阿尔茨海默氏症相关疾病研究中存在的差距。通过确定严重的诊断不足以及少数种族和族裔群体代表性不足的情况,旨在减少痴呆症登记册登记的障碍。制定解决方案,以缓解当前数据和注册方面的差异,并将个人与研究、医生和社区团体联系起来。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Virginia Memory Project: Using the Healthy Brain Initiative Roadmap to design a statewide dementia registry
INTRODUCTIONThe Virginia Memory Project (VMP) is a statewide epidemiological registry for Alzheimer's disease and related disorders (ADRD) and other neurodegenerative conditions. It aims to support dementia research, policy, and care by leveraging the Centers for Disease Control (CDC) Healthy Brain Initiative (HBI) Roadmap.METHODSTo capture comprehensive data, the VMP integrates self‐enrollment and automatic enrollment using Virginia's All‐Payer Claims Database (APCD). It also adapts Behavioral Risk Factors Surveillance Survey (BRFSS) modules for self‐reported cognitive and caregiving data, offering connections to research, clinical services, and education.RESULTSVirginia successfully codified the VMP in the 2024 general assembly session.DISCUSSIONThe VMP demonstrates a novel approach to Alzheimer's Disease and Related Disorders (ADRD) surveillance by combining traditional registry functions with community engagement and workforce development. Future efforts will focus on increasing enrollment, especially among underrepresented groups, to enhance data‐driven dementia policy and care in Virginia.Highlights Integrated the Healthy Brain Initiative (HBI) domains into the newest statewide epidemiological dementia registry in the Commonwealth of Virginia. Collected data and identified gaps in the current research related to dementia and Alzheimer's related diseases. Aimed to mitigate barriers to dementia registry enrollment by identifying significant underdiagnosis and underrepresentation of racial and ethnic minority groups. Developed solutions to alleviate the current data and enrollment disparities and to connect individuals to research, physicians, and community groups.
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来源期刊
Alzheimer's & Dementia
Alzheimer's & Dementia 医学-临床神经学
CiteScore
14.50
自引率
5.00%
发文量
299
审稿时长
3 months
期刊介绍: Alzheimer's & Dementia is a peer-reviewed journal that aims to bridge knowledge gaps in dementia research by covering the entire spectrum, from basic science to clinical trials to social and behavioral investigations. It provides a platform for rapid communication of new findings and ideas, optimal translation of research into practical applications, increasing knowledge across diverse disciplines for early detection, diagnosis, and intervention, and identifying promising new research directions. In July 2008, Alzheimer's & Dementia was accepted for indexing by MEDLINE, recognizing its scientific merit and contribution to Alzheimer's research.
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