The Brain Health Registry: An internet-based platform for recruitment, assessment, and longitudinal monitoring of participants for neuroscience studies.

The Brain Health Registry: An internet-based platform for recruitment, assessment, and longitudinal monitoring of participants for neuroscience studies.
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脑健康登记处:一个基于互联网的平台,用于神经科学研究参与者的招募、评估和纵向监测。

DOI:
10.1016/j.jalz.2018.02.021
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发表时间:
2018-08
期刊:
Alzheimer's & dementia : the journal of the Alzheimer's Association
影响因子:
--
通讯作者:
Veitch D
Veitch D
中科院分区:
其他
文献类型:
--
作者:
Weiner MW;Nosheny R;Camacho M;Truran-Sacrey D;Mackin RS;Flenniken D;Ulbricht A;Insel P;Finley S;Fockler J;Veitch D

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神经科学研究和临床试验参与者的招募、评估和纵向监测限制了新疗法的开发。互联网的广泛使用允许在无人监督的环境中捕获参与者的数据。脑健康登记处 (BHR) 是一个网站和在线登记处,从参与者及其研究合作伙伴 (SP) 收集数据。 BHR 获取自我和 SP 报告调查问卷以及神经心理学数据,包括 Cogstate Brief Battery、Lumos Labs 神经认知性能测试和 MemTrax 记忆测试。参与者在参与前提供知情同意书。基线数据和纵向数据分别来自超过 53,000 名和 24,000 名参与者。超过 13,700 名参与者被转介,超过 1700 名参与者参加了临床阿尔茨海默病和衰老研究,其中包括 5 项观察性研究和 7 项干预试验。参与者和 SP 的在线评估以相对较低的成本为神经科学研究和临床试验提供了有用的信息,并最终可能用于常规临床实践。
Recruitment, assessment, and longitudinal monitoring of participants for neuroscience studies and clinical trials limit the development of new treatments. Widespread Internet use allows data capture from participants in an unsupervised setting. The Brain Health Registry (BHR), a website and online registry, collects data from participants and their study partners (SPs). BHR obtains self and SP report questionnaires, and neuropsychological data including the Cogstate Brief Battery, Lumos Labs Neurocognitive Performance Test, and MemTrax Memory Test. Participants provide informed consent prior to participation. Baseline and longitudinal data were obtained from over 53,000 and 24,000 participants, respectively. Over 13,700 participants were referred to, and over 1700 were enrolled in, clinical Alzheimer’s and aging studies, including 5 observational studies and 7 intervention trials. Online assessments of participants and SPs provide useful information at relatively low cost for neuroscience studies and clinical trials, and may ultimately be used in routine clinical practice.
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