痴呆症护理研究和心理社会因素
Geon Ha Kim1, Danbee Kang2,3, Sung Hoon Kang4
1Neurology, Ewha Womans University Mokdong Hospital, Ewha Womans University College of Medicine, Seoul, Korea, Republic of (South).
Alzheimer's & dementia : the journal of the Alzheimer's Association
|December 26, 2025
概括
韩国痴呆症协会推出了JOY-ALZ,这是一个针对阿尔茨海默病 (AD) 治疗的真实世界数据平台. 该倡议旨在收集全面的患者数据,为韩国特定的治疗指南提供信息,并促进公平获得AD治疗.
科学领域:
- 神经科学是一个神经科学.
- 临床研究 临床研究
- 数据科学数据科学数据科学
背景情况:
- 阿尔茨海默病 (AD) 管理正在转向疾病修饰疗法 (DMT) 和先进生物标志物.
- 新的AD疗法的整合受到成本,副作用和有限的认识的阻碍,特别是在东亚人口中.
- 初步数据表明,东亚人可能有较低的粉样蛋白相关成像异常 (ARIA) 率,需要针对特定地区的指导方针.
研究的目的:
- 建立一个现实世界数据 (RWD) 平台,用于韩国的AD疗法.
- 为系统性患者数据收集和分析开发一个协作网络.
- 为韩国特定的治疗指南提供信息,并促进公平获得AD疗法.
主要方法:
- 韩国痴呆症协会 (KDA) 在2024年推出了JOY-ALZ (韩国ALZ治疗和诊断的联合注册) 平台.
- 利用CURE框架,JOY-ALZ专注于基础设施的创建,结果的评估,合作的加强和全球数据共享.
- 在41家医院发起了IRB提交全面RWD收集,包括临床,神经成像和生物样本数据,预计到2025年6月获得批准.
主要成果:
- 随着lecanemab在2024年5月获得批准,JOY-ALZ发布了适当使用建议 (AUR) 并举办了教育研讨会.
- 在2024年12月,在41家医院发起了IRB提交.
- 在IRB批准后,预计将进行全面的RWD收集,包括临床数据,神经成像和生物样本.
结论:
- 乔伊-阿尔兹将在韩国为AD治疗建立一个强大的RWD平台.
- 该平台将补充像ALZ-NET这样的全球倡议,为韩国提供具体的见解.
- 乔伊-阿尔兹旨在推进阿尔茨海默病的研究,为治疗指南提供信息,确保公平的准入,并促进国际合作.
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