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脑健康登记研究伙伴门户:用于数字、对偶数据收集的新型基础设施。

Brain Health Registry Study Partner Portal: Novel infrastructure for digital, dyadic data collection.

机构信息

VA Advanced Imaging Research Center, San Francisco Veteran's Administration Medical Center, San Francisco, California, USA.

Department of Radiology and Biomedical Imaging, University of California San Francisco, San Francisco, California, USA.

出版信息

Alzheimers Dement. 2024 Feb;20(2):846-857. doi: 10.1002/alz.13492. Epub 2023 Oct 5.

DOI:10.1002/alz.13492
PMID:37797205
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC10916998/
Abstract

BACKGROUND

In Alzheimer's disease (AD) research, subjective reports of cognitive and functional decline from participant-study partner dyads is an efficient method of assessing cognitive impairment and clinical progression.

METHODS

Demographics and subjective cognitive/functional decline (Everyday Cognition Scale [ECog]) scores from dyads enrolled in the Brain Health Registry (BHR) Study Partner Portal were analyzed. Associations between dyad characteristics and both ECog scores and study engagement were investigated.

RESULTS

A total of 10,494 BHR participants (mean age = 66.9 ± 12.16 standard deviations, 67.4% female) have enrolled study partners (mean age = 64.3 ± 14.3 standard deviations, 49.3% female), including 8987 dyads with a participant 55 years of age or older. Older and more educated study partners were more likely to complete tasks and return for follow-up. Twenty-five percent to 27% of older adult participants had self and study partner-report ECog scores indicating a possible cognitive impairment.

DISCUSSION

The BHR Study Partner Portal is a unique digital tool for capturing dyadic data, with high impact applications in the clinical neuroscience and AD fields. Highlights The Brain Health Registry (BHR) Study Partner Portal is a novel, digital platform of >10,000 dyads. Collection of dyadic online subjective cognitive and functional data is feasible. The portal has good usability as evidenced by positive study partner feedback. The portal is a potential scalable strategy for cognitive impairment screening in older adults.

摘要

背景

在阿尔茨海默病(AD)研究中,由参与者-研究伙伴二人组报告的认知和功能下降的主观报告是评估认知障碍和临床进展的有效方法。

方法

分析了参与大脑健康登记处(BHR)研究伙伴门户的二人组的人口统计学和主观认知/功能下降(日常认知量表[ECog])评分。调查了二人组特征与 ECog 评分和研究参与度之间的关联。

结果

共有 10494 名 BHR 参与者(平均年龄 66.9±12.16 标准差,67.4%为女性)已招募研究伙伴(平均年龄 64.3±14.3 标准差,49.3%为女性),包括 8987 名年龄在 55 岁或以上的参与者。年龄较大和受教育程度较高的研究伙伴更有可能完成任务并返回进行随访。25%至 27%的老年参与者有自我和研究伙伴报告的 ECog 评分表明存在可能的认知障碍。

讨论

BHR 研究伙伴门户是一种用于捕获二人组数据的独特数字工具,在临床神经科学和 AD 领域具有重要的应用价值。亮点大脑健康登记处(BHR)研究伙伴门户是一个拥有超过 10000 对二人组的新颖数字平台。收集二人组在线主观认知和功能数据是可行的。门户具有良好的可用性,证据是研究伙伴的积极反馈。该门户是对老年人进行认知障碍筛查的潜在可扩展策略。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/2a88/10916998/7e8a2ea8bbc2/ALZ-20-846-g002.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/2a88/10916998/3b101974d059/ALZ-20-846-g003.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/2a88/10916998/a02a333a5984/ALZ-20-846-g001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/2a88/10916998/7e8a2ea8bbc2/ALZ-20-846-g002.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/2a88/10916998/3b101974d059/ALZ-20-846-g003.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/2a88/10916998/a02a333a5984/ALZ-20-846-g001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/2a88/10916998/7e8a2ea8bbc2/ALZ-20-846-g002.jpg

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本文引用的文献

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Neurology. 2023 Mar 7;100(10):e1020-e1027. doi: 10.1212/WNL.0000000000201658. Epub 2022 Nov 30.
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Improving generalizability and study design of Alzheimer's disease cohort studies in the United States by including under-represented populations.
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Alzheimers Dement. 2023 Apr;19(4):1549-1557. doi: 10.1002/alz.12823. Epub 2022 Nov 13.
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