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

Article type: Research Article

Authors: Lim, Yen Ying^{a; *} | Yassi, Nawaf^{a; b} | Bransby, Lisa^a | Properzi, Michael^c | Buckley, Rachel^{a; c; d; e}

Affiliations: [a] Melbourne Dementia Research Centre, The Florey Institute of Neuroscience and Mental Health and The University of Melbourne, Parkville, VIC, Australia | [b] Department of Medicine and Neurology, Royal Melbourne Hospital, University of Melbourne, Parkville, VIC, Australia | [c] Department of Neurology, Massachusetts General Hospital and Harvard Medical School, Boston, MA, USA | [d] Center for Alzheimer Research and Treatment, Department of Neurology, Brigham and Women’s Hospital, Boston, MA, USA | [e] Melbourne School of Psychological Sciences, University of Melbourne, Parkville, VIC, Australia

Correspondence: [*] Correspondence to: Yen Ying Lim, 30 Royal Parade, Parkville, VIC 3052, Australia. Tel.: +61 3 9035 3000; Fax: +61 3 9035 3107; [email protected]

Abstract: 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 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. 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.

Keywords: Alzheimer’s disease, neuropsychological test, neuropsychology, neuroscience, online systems, psychological test

DOI: 10.3233/JAD-181139

Journal: Journal of Alzheimer's Disease, vol. 68, no. 3, pp. 1211-1228, 2019