Resources, methods, and data infrastructure to promote research in dementia care, caregiving, and services.
Resources, methods, and data infrastructure to promote research in dementia care, caregiving, and services.
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DOI：
10.1111/jgs.17339
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发表时间：
2021-07
影响因子：
6.3
通讯作者：
Mor V
中科院分区：
文献类型：
--
作者：
Pike KJ;Fazio S;Bynum JPW;Travison TG;Wendler D;Mor V
作为国家阿尔茨海默病项目法案(NPA)的一部分，国家老龄研究所(NIA)与卫生与公众服务部(Department Of Health And Human Services)于2020年8月13日主办了2020年痴呆症护理、护理和服务研究峰会虚拟会议系列。本文反映了与主题6：研究资源、方法和数据基础设施相关的三个演示文稿。拜纳姆博士讨论了为以人口和医疗保健为基础的研究确定人的挑战，包括痴呆症的定义如何随着时间的推移而变化，使用电子数据源固有的机会和挑战，以及根据研究目标和问题调整数据收集策略的必要性。Travison博士概述了嵌入式实用临床试验(EPCT)的日益广泛使用，以及如何增强其在痴呆症研究中的影响。温德勒博士介绍了与痴呆症研究同意有关的伦理考虑，包括决策能力的评估和决策代理人的作用。索赔数据、电子健康记录和其他“现有”数据来源的可用性使嵌入式实用临床试验的使用和开发变得更容易和更有吸引力。在其他方面，它们提供了更低的成本和对现实世界环境的通用性方面的优势。这反过来又需要使用信息学和分析方法来解释这种数据的一些局限性和复杂性，包括多级别聚类，以及链接和联合分析来自痴呆症患者及其护理伙伴的数据的需要。作为这一进程的一部分，重要的是扩大对谁的决策能力进行评估的范围，使这些评估更加具体于研究，并协助代理人根据个人在丧失能力时为自己选择的决定(即替代判断)作出决定。
The National Institute on Aging (NIA), in conjunction with the Department of Health and Human Services as part of the National Alzheimer’s Project Act (NAPA), hosted a 2020 Dementia Care, Caregiving, and Services Research Summit Virtual Meeting Series on August 13, 2020. This paper reflects three presentations related to Theme 6: Research Resources, Methods, and Data Infrastructure. Dr. Bynum discussed the challenges of identifying people for population- and health care-based research, including how definitions of dementia have changed over time, the opportunities and challenges inherent in the use of electronic data sources, and the need to fit data collection strategies to research goals and questions. Dr. Travison provided an overview on the growing use of embedded pragmatic clinical trials (ePCTs) and how to enhance their impact in dementia research. Dr. Wendler presented on the ethical considerations relevant to consent for dementia research, including assessment of decisional capacity and the role of decisional surrogates. The availability of claims data, electronic health records, and other sources of “existing” data have made the use and development of embedded pragmatic clinical trials both easier and more appealing. Among other things, they offer advantages in terms of lower cost and generalizability to real world settings. This is turn has necessitated the use of informatic and analytic approaches to account for some of the limitations and complexities of such data, including multilevel clustering and the need to link and jointly analyze data from the person with dementia and those of their care partner. As part of this process, it will be important to broaden the scope of who is assessed for decisional capacity, make those assessments more study specific, and assist surrogates in making decisions based on what the individual would have chosen for themselves if capacitated (i.e. substituted judgement).
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DOI：
10.1007/s11136-016-1471-7
发表时间：
2017-03
期刊：
Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation
影响因子：
--
作者：
Jennings LA;Palimaru A;Corona MG;Cagigas XE;Ramirez KD;Zhao T;Hays RD;Wenger NS;Reuben DB
通讯作者：
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影响因子：
9.9
作者：
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通讯作者：
Petersen RC
DOI：
10.1186/alzrt97
发表时间：
2011-12-09
期刊：
Alzheimer's research & therapy
影响因子：
--
作者：
Frank L;Lenderking WR;Howard K;Cantillon M
通讯作者：
Cantillon M
影响因子：
6.7
作者：
Bucks, RS;Ashworth, DL;Siegfried, K
通讯作者：
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影响因子：
7.2
作者：
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通讯作者：
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