公共卫生 公共卫生
Casper de Boer1,2, Hanneke F M Rhodius- Meester1,3,4, Sophie M van der Landen1,2
1Amsterdam Neuroscience, Neurodegeneration, Amsterdam, Netherlands.
Alzheimer's & dementia : the journal of the Alzheimer's Association
|December 23, 2025
概括
在船上队列是一个新的荷兰基础设施,收集患者数据,以研究阿尔茨海默病 (AD) 轨迹. 它旨在改进预测模型并支持医疗保健创新,以获得更好的患者结果.
科学领域:
- 神经科学是一个神经科学.
- 老年学是指老年学的学科.
- 公共卫生 公共卫生
背景情况:
- 阿尔茨海默氏病 (AD) 发展了几十年,但目前的数据收集往往错过了疾病的全部过程.
- 现有的阿尔茨海默病预测模型可能不反映现实世界患者的经验.
- 需要一个国家数据基础设施来捕捉完整的AD轨迹并改善与患者相关的结果.
研究的目的:
- 建立一个荷兰国家数据基础设施,用于研究阿尔茨海默病 (AD).
- 收集患者报告的结果指标 (PROM) 和医疗数据,以了解AD疾病的发展轨迹.
- 将收集的数据与现有注册表联系起来,并作为医疗保健创新的平台.
主要方法:
- 机上队列使用以参与者为中心的方法,在线收集PROM和最小案例报告表 (CRF).
- 患有AD或患有AD风险的参与者及其研究伙伴被直接招募.
- 与现有注册表的数据链接得到了便利,利益相关者的投入指导了项目开发.
主要成果:
- 在2024年10月之前,ABOARD队列注册了10,275名参与者和1,383名合作伙伴.
- 超过90%的参与者同意将数据与现有注册表联系起来.
- 报告记忆问题的参与者在心理健康,认知,生活质量和生活方式方面的PROM中表现更差.
结论:
- 在船上队列提供了一个国家基础设施研究AD轨迹与参与者的参与.
- 这种基础设施可以作为一个注册表来推进AD研究,并提供用于评估新疗法的真实数据.
- 该项目旨在通过专注于患者报告的结果和全面的数据链接来改善AD的理解和管理.
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