The PREVENT-AD cohort: accelerating Alzheimer’s disease research and treatment in Canada and beyond

ABSTRACT The PREVENT-AD is an investigator-driven study that was created in 2011 and enrolled cognitively normal older adults with a family history of sporadic AD. Participants are deeply phenotyped and have now been followed annually for more than 12 years [median follow-up 8.0 years,SD 3.1]. Multimodal MRI, genetic, neurosensory, clinical, cerebrospinal fluid and cognitive data collected until 2017 on 348 participants who agreed to open sharing with the neuroscience community were already available. We now share a new release including 6 years of additional follow-up cognitive data, and additional MRI follow-ups, clinical progression, new longitudinal behavioral and lifestyle measures (questionnaires, actigraphy), longitudinal AD plasma biomarkers, amyloid-beta and tau PET, magnetoencephalography, as well as neuroimaging analytic measures from all MRI modalities. We describe the PREVENT-AD study, the data shared with the global research community as well as the model we created to sustain longitudinal follow-ups while also allowing new innovative data collection. Competing Interest Statement KB has served as a consultant and at advisory boards for Abbvie, AC Immune, ALZPath, AriBio, Beckman-Coulter, BioArctic, Biogen, Eisai, Lilly, Moleac Pte. Ltd, Neurimmune, Novartis, Ono Pharma, Prothena, Quanterix, Roche Diagnostics, Sanofi and Siemens Healthineers; has served at data monitoring committees for Julius Clinical and Novartis; has given lectures, produced educational materials and participated in educational programs for AC Immune, Biogen, Celdara Medical, Eisai and Roche Diagnostics; and is a co-founder of Brain Biomarker Solutions in Gothenburg AB (BBS), which is a part of the GU Ventures Incubator Program, outside the work presented in this paper. The other authors report no competing interests Funding Statement This second release was made possible via the Canadian Alzheimer Platform (CAP) funded by Brain Canada (S. Villeneuve). The second phase of data collection was supported by a Fonds de Recherche du Québec Santé (FRQ-356162) to J. Poirier and S. Villeneuve, a Brain Canada grant to S. Villeneuve, a J. L. Levesque Foundation to J. Poirier and S. Villeneuve and a Canada Foundation for Innovation to S. Villeneuve. Among the project grants used to collect data in the Phase 2 of data acquisition, the Alzheimer Society of Canada (NIG-17-08), the Alzheimer Association and the Canadian Institutes of Health Research (CIHR; PJT-438655, PJT-367122, PJT-410106, PJT-463677) grants to S. Villeneuve supported cognitive, behavioral, plasma, PET and MEG data; the National Institutes of Health (NIH), National Institute on Aging (NIA; R01AG068563; 3R01AG068563-04S1), Alzheimer’s Association & Brain Canada (AARG-22-927100) and Canada First Research Excellence Fund, Healthy Brains for Healthy Lives, Innovative Ideas Program grants to R.N. Spreng supported fluid, behavioral, cognitive, novel cognitive, and all MRI data; and the CIHR grants to J. Poirier (#PJT 153287, 178210), J.S.C. Breitner (#PJT 451830) and L. Collins (#PJT 165921) as well as a Lemaire foundation donation to J Poirier supported behavioral, cognitive, genetic, proteomic and fluid data collection. The first phase of data collection was supported by a $13.5 million, 7-year public-private partnership using funds provided by McGill University, the FRQ-S, an unrestricted research grant from Pfizer Canada, the J.L. Levesque Foundation, the Lemaire Foundation, the Douglas Hospital Research Centre and Foundation, the Government of Canada, and the Canada Fund for Innovation to J.S.C. Breitner and J. Poirier. Private sector contributions are facilitated by the Development Office of the McGill University Faculty of Medicine and by the Douglas Hospital Research Centre Foundation (http://www.douglas.qc.ca/). The first release was supported by the Canadian Open Neuroscience Platform funded, in part, by Brain Canada. MRG is supported by a FRSQ Salary Award, the Canada Brain Research Fund, an innovative arrangement between the Government of Canada (through Health Canada) and Brain Canada Foundation, an Alzheimer Society Research Program New Investigator Grant, the Canadian Institutes of Health Research, the Canada First Research Excellence Fund, awarded through the Healthy Brains, Healthy Lives initiative at McGill University, and the National Institutes of Health (P30 AG048785). S.B. is supported by the United States National Institutes of Health (NIH, R01-EB026299-05), the Tier-1 CIHR Canada Research Chair of Neural Dynamics of Brain Systems (CRC-2017-00311), and a Discovery Grant from the Natural Sciences and Engineering Research Council of Canada (436355-13). KB is supported by the Swedish Research Council (#2017-00915 and #2022-00732), the Swedish Alzheimer Foundation (#AF-930351, #AF-939721, #AF-968270, and #AF-994551), Hjärnfonden, Sweden (#ALZ2022-0006, #FO2024-0048-TK-130 and FO2024-0048-HK-24), the Swedish state under the agreement between the Swedish government and the County Councils, the ALF-agreement (#ALFGBG-965240 and #ALFGBG-1006418), the European Union Joint Program for Neurodegenerative Disorders (JPND2019-466-236), the Alzheimer’s Association 2021 Zenith Award (ZEN-21-848495), the Alzheimer’s Association 2022-2025 Grant (SG-23-1038904 QC), La Fondation Recherche Alzheimer (FRA), Paris, France, the Kirsten and Freddy Johansen Foundation, Copenhagen, Denmark, Familjen Rönströms Stiftelse, Stockholm, Sweden, and an anonymous philanthropist and donor. R.N.S. is additionally supported by FRQ-S. Author Declarations I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained. Yes The details of the IRB/oversight body that provided approval or exemption for the research described are given below: Ethics committee/IRB of McGill University and Douglas Mental Health University Institute Research gave ethical approval for this work. I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals. Yes I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance). Yes I have followed all appropriate research reporting guidelines, such as any relevant EQUATOR Network research reporting checklist(s) and other pertinent material, if applicable. Yes Data Availability All data produced in the present work are available online for researchers at: https://registeredpreventad.loris.ca/