Melbourne Dementia Research Centre, The Florey Institute of Neuroscience and Mental Health and The University of Melbourne, Parkville, VIC, Australia.
Department of Medicine and Neurology, Royal Melbourne Hospital, University of Melbourne, Parkville, VIC, Australia.
J Alzheimers Dis. 2019;68(3):1211-1228. doi: 10.3233/JAD-181139.
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.
Describe the HBP methodology and report baseline characteristics and adherence indices of participants.
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.
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 South Wales (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.
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.
在患有阿尔茨海默病（AD）风险的中年人群中，对最早可检测到的认知能力下降进行特征描述，将有助于更好地了解疾病的早期轨迹，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），用于招募、评估和监测处于风险中的中年人群。
描述 HBP 方法，并报告参与者的基线特征和依从性指数。
在 2017 年 2 月至 2018 年 8 月期间，我们的网站（healthybrainproject.org.au）招募了 4000 名具有一级或二级痴呆家族史的社区中年澳大利亚成年人。参与者被引导完成五个模块：“基础知识”、“健康史”、“感觉如何”、“生活方式”和“思维方式”。其中，1816 名参与者收到了用于基因分析的唾液采样套件。
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 68830 澳元（35044 美元）。参与者在注册后平均需要 26.4（49.7）天完成问卷和认知测试。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=1450），56%（n=2221）完成了 5 个模块中的 4 个。大多数唾液试剂盒（89%）已经归还。
HBP 加入了全球少数几个评估和监测大量 AD 风险人群的在线登记处。我们的研究扩展了这些努力，重点关注中年人群，在这个阶段最早会出现认知和病理变化的迹象。
