The Healthy Brain Project: An Online Platform for the Recruitment, Assessment, and Monitoring of Middle-Aged Adults at Risk of Developing Alzheimer's Disease

The Healthy Brain Project: An Online Platform for the Recruitment, Assessment, and Monitoring of Middle-Aged Adults at Risk of Developing Alzheimer's Disease
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DOI:
10.3233/jad-181139
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发表时间:
2019-01-01
影响因子:
4
通讯作者:
Buckley, Rachel
Buckley, Rachel
中科院分区:
医学3区
文献类型:
--
作者:
Lim, Yen Ying;Yassi, Nawaf;Buckley, Rachel

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背景:在有阿尔茨海默病(AD)风险的中年人中,描述最早可证明的认知能力下降将有助于更好地了解早期疾病轨迹,并在临床症状出现之前提供治疗。我们开发了一个在线平台healthybrainproject.org.au(健康大脑计划;HBP)来招募、评估和监测有风险的中年人。目的:描述HBP方法并报告参与者的基线特征和依从性指数。方法:在2017年2月至2018年8月期间,在我们的网站(healthybrainproject.org.au)上登记了4000名具有一或二度痴呆症家族史的社区中年澳大利亚成年人。参与者被要求完成五个模块:“基础知识”、“健康史”、“你的感觉”、“你如何生活”和“你如何思考”。其中,1816名参与者获得了用于基因分析的唾液取样工具包。结果:参与者的平均(SD)年龄为55.5(6.8)岁,受教育年限为11.8(3.4)年,个人年收入为68,830澳元(35,044美元)。参与者在入组后花了26.4(49.7)天完成问卷调查和认知测试。大多数参与者来自维多利亚州(63%),其次是新南威尔士州(14%)。大多数参与者(74%)为女性,76%为白种人。大约36%的参与者完成了所有模块(n = 1,450), 56% (n = 2,221)完成了5个模块中的4个。大多数唾液试剂盒(89%)已归还。结论:HBP加入了全球为数不多的在线注册机构,评估和监测大量AD风险个体。我们的研究扩展了这些努力,重点关注中年,在那里最早的认知和病理变化的迹象将显现。
Background: Characterizing the earliest demonstrable cognitive decline in middle-aged adults at risk of Alzheimer's disease (AD) will allow for the better understanding of the early disease trajectory, and the provision of therapies prior to clinical symptom onset. We developed an online platform-healthybrainproject.org.au (Healthy Brain Project; HBP)-to recruit, assess, and monitor at-risk middle-aged adults.Objective: Describe the HBP methodology and report baseline characteristics and adherence indices of participants.Methods: Between February 2017 and August 2018, 4,000 community-based middle-aged Australian adults with a first or second-degree family history of dementia enrolled at our website (healthybrainproject.org.au). Participants were directed to complete five modules: "Basics", "Health History", "How You Feel", "How You Live", and "How You Think". Of these, 1,816 participants have received a saliva sampling kit for genetic analysis.Results: Participants had a mean (SD) age of 55.5 (6.8) years, 11.8 (3.4) years of education, and annual personal income of AUD$68,830 ($35,044). Participants took 26.4 (49.7) days after enrolment to complete questionnaires and cognitive tests. Most participants were from Victoria (63%), followed by New SouthWales (14%). Most participants (74%) were female and 76% identified as Caucasian. Approximately 36% of participants completed all modules (n = 1,450), and 56% (n = 2,221) completed 4 out of 5 modules. Most saliva kits (89%) had been returned.Conclusion: The HBP joins a handful of online registries worldwide that assess and monitor a large cohort of individuals at risk of AD. Our study extends on these efforts by focusing on midlife, where the earliest signs of cognitive and pathological changes will manifest.