Yen Ying Lim1, Nawaf Yassi1,2, Lisa Bransby1, Michael Properzi3, Rachel Buckley1,3,4,5. 1. Melbourne Dementia Research Centre, The Florey Institute of Neuroscience and Mental Health and The University of Melbourne, Parkville, VIC, Australia. 2. Department of Medicine and Neurology, Royal Melbourne Hospital, University of Melbourne, Parkville, VIC, Australia. 3. Department of Neurology, Massachusetts General Hospital and Harvard Medical School, Boston, MA, USA. 4. Center for Alzheimer Research and Treatment, Department of Neurology, Brigham and Women's Hospital, Boston, MA, USA. 5. Melbourne School of Psychological Sciences, University of Melbourne, Parkville, VIC, Australia.
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.
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.
Authors: Stephanie Perin; Rachel F Buckley; Matthew P Pase; Nawaf Yassi; Alexandra Lavale; Peter H Wilson; Adrian Schembri; Paul Maruff; Yen Ying Lim Journal: Alzheimers Dement (N Y) Date: 2020-06-26
Authors: Nikolas Dietzel; Lara Kürten; Linda Karrer; Michael Reichold; Laura Köhler; Andreas Nagel; Christina Chmelirsch; Kathrin Seebahn; Markus Hladik; Sebastian Meuer; Anna Kirchner; Kristina Holm; Marina Selau; Marco Wendel; Jörg Trinkwalter; Hans-Ulrich Prokosch; Elmar Graessel; Peter L Kolominsky-Rabas Journal: BMJ Open Date: 2021-02-08 Impact factor: 2.692
Authors: Matthew Calamia; Daniel S Weitzner; Alyssa N De Vito; John P K Bernstein; Ray Allen; Jeffrey N Keller Journal: PLoS One Date: 2021-01-19 Impact factor: 3.240
Authors: Lisa Bransby; Rachel F Buckley; Emily Rosenich; Katherine H Franks; Nawaf Yassi; Paul Maruff; Matthew P Pase; Yen Ying Lim Journal: Alzheimers Dement (Amst) Date: 2022-02-09
Authors: Christopher Fowler; Stephanie R Rainey-Smith; Sabine Bird; Julia Bomke; Pierrick Bourgeat; Belinda M Brown; Samantha C Burnham; Ashley I Bush; Carolyn Chadunow; Steven Collins; James Doecke; Vincent Doré; Kathryn A Ellis; Lis Evered; Amir Fazlollahi; Jurgen Fripp; Samantha L Gardener; Simon Gibson; Robert Grenfell; Elise Harrison; Richard Head; Liang Jin; Adrian Kamer; Fiona Lamb; Nicola T Lautenschlager; Simon M Laws; Qiao-Xin Li; Lucy Lim; Yen Ying Lim; Andrea Louey; S Lance Macaulay; Lucy Mackintosh; Ralph N Martins; Paul Maruff; Colin L Masters; Simon McBride; Lidija Milicic; Madeline Peretti; Kelly Pertile; Tenielle Porter; Morgan Radler; Alan Rembach; Joanne Robertson; Mark Rodrigues; Christopher C Rowe; Rebecca Rumble; Olivier Salvado; Greg Savage; Brendan Silbert; Magdalene Soh; Hamid R Sohrabi; Kevin Taddei; Tania Taddei; Christine Thai; Brett Trounson; Regan Tyrrell; Michael Vacher; Shiji Varghese; Victor L Villemagne; Michael Weinborn; Michael Woodward; Ying Xia; David Ames Journal: J Alzheimers Dis Rep Date: 2021-06-03
Authors: Lisa Vermunt; Graciela Muniz-Terrera; Lea Ter Meulen; Colin Veal; Kaj Blennow; Archie Campbell; Isabelle Carrié; Julien Delrieu; Karine Fauria; Gema Huesa Rodríguez; Silvia Ingala; Natalie Jenkins; José Luis Molinuevo; Pierre-Jean Ousset; David Porteous; Niels D Prins; Alina Solomon; Brian D Tom; Henrik Zetterberg; Marissa Zwan; Craig W Ritchie; Philip Scheltens; Gerald Luscan; Anthony J Brookes; Pieter Jelle Visser Journal: Alzheimers Res Ther Date: 2020-01-06 Impact factor: 6.982
Authors: Matthew P Pase; Ella Rowsthorn; Marina G Cavuoto; Alexandra Lavale; Nawaf Yassi; Paul Maruff; Rachel F Buckley; Yen Ying Lim Journal: JAMA Netw Open Date: 2022-03-01