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The PREVENT-AD cohort : Accelerating Alzheimer's disease research and treatment in Canada and beyond

Villeneuve, Sylvia ; Poirier, Judes ; Breitner, John C.S. ; Tremblay-Mercier, Jennifer ; Remz, Jordana ; Raoult, Jean Michel ; Yakoub, Yara ; Gallego-Rudolf, Jonathan ; Qiu, Ting and Fajardo Valdez, Alfonso , et al. (2025) In Alzheimer's and Dementia 21(10).
Abstract

The PResymptomatic EValuation of Experimental or Novel Treatments for Alzheimer's Disease (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 magnetic resonance imaging (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... (More)

The PResymptomatic EValuation of Experimental or Novel Treatments for Alzheimer's Disease (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 magnetic resonance imaging (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 positron emission tomography (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. Highlights: The PResymptomatic EValuation of Experimental or Novel Treatments for Alzheimer's Disease (PREVENT-AD) is a single-site longitudinal study that started in 2011 with annual follow-up data collection on individuals at risk of Alzheimer's disease who were all cognitively normal at enrolment. All 387 participants were enrolled between 2011 and 2017 and 306 (79%) of these participants were still in the study as of December 2023. While the PREVENT-AD dataset was not originally planned to be shared with the global research community, 348 participants retrospectively consented for their data to be shared with researchers worldwide. The first release of data was in 2019. We now share a second release that includes 6 years of additional follow-up visits, information on clinical progression and novel cognitive, behavioral, genetic, plasma and neuroimaging (amyloid and tau positron emission tomography [PET], magnetoencephalography [MEG], and new magnetic resonance imaging [MRI] sequences) data. It also includes analytic outputs for neuroimaging modalities.

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organization
publishing date
type
Contribution to journal
publication status
published
subject
keywords
biomarkers, clinical progression, cognition, data repository, neuroimaging, preclinical
in
Alzheimer's and Dementia
volume
21
issue
10
article number
e70653
publisher
Wiley
external identifiers
  • pmid:41020412
  • scopus:105017416389
ISSN
1552-5260
DOI
10.1002/alz.70653
language
English
LU publication?
yes
id
470f64f0-e254-47c6-8074-ad86bd5c7356
date added to LUP
2025-11-26 11:27:43
date last changed
2025-11-27 03:00:08
@article{470f64f0-e254-47c6-8074-ad86bd5c7356,
  abstract     = {{<p>The PResymptomatic EValuation of Experimental or Novel Treatments for Alzheimer's Disease (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 magnetic resonance imaging (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 positron emission tomography (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. Highlights: The PResymptomatic EValuation of Experimental or Novel Treatments for Alzheimer's Disease (PREVENT-AD) is a single-site longitudinal study that started in 2011 with annual follow-up data collection on individuals at risk of Alzheimer's disease who were all cognitively normal at enrolment. All 387 participants were enrolled between 2011 and 2017 and 306 (79%) of these participants were still in the study as of December 2023. While the PREVENT-AD dataset was not originally planned to be shared with the global research community, 348 participants retrospectively consented for their data to be shared with researchers worldwide. The first release of data was in 2019. We now share a second release that includes 6 years of additional follow-up visits, information on clinical progression and novel cognitive, behavioral, genetic, plasma and neuroimaging (amyloid and tau positron emission tomography [PET], magnetoencephalography [MEG], and new magnetic resonance imaging [MRI] sequences) data. It also includes analytic outputs for neuroimaging modalities.</p>}},
  author       = {{Villeneuve, Sylvia and Poirier, Judes and Breitner, John C.S. and Tremblay-Mercier, Jennifer and Remz, Jordana and Raoult, Jean Michel and Yakoub, Yara and Gallego-Rudolf, Jonathan and Qiu, Ting and Fajardo Valdez, Alfonso and Mohammediyan, Bery and Javanray, Mohammadali and Metz, Amelie and Sanami, Safa and Ourry, Valentin and Wearn, Alfie and Pastor-Bernier, Alexandre and Edde, Manon and Gonneaud, Julie and Strikwerda-Brown, Cherie and Tardif, Christine L. and Gauthier, Claudine J. and Descoteaux, Maxime and Dadar, Mahsa and Vachon-Presseau, Étienne and Baril, Andrée Ann and Ducharme, Simon and Montembeault, Maxime and Geddes, Maiya R. and Soucy, Jean Paul and Rajah, Natasha and Laforce, Robert and Bocti, Christian and Davatzikos, Christos and Bellec, Lune and Rosa-Neto, Pedro and Baillet, Sylvain and Evans, Alan C. and Collins, D. Louis and Chakravarty, M. Mallar and Blennow, Kaj and Zetterberg, Henrik and Spreng, R. Nathan and Pichet Binette, Alexa}},
  issn         = {{1552-5260}},
  keywords     = {{biomarkers; clinical progression; cognition; data repository; neuroimaging; preclinical}},
  language     = {{eng}},
  number       = {{10}},
  publisher    = {{Wiley}},
  series       = {{Alzheimer's and Dementia}},
  title        = {{The PREVENT-AD cohort : Accelerating Alzheimer's disease research and treatment in Canada and beyond}},
  url          = {{http://dx.doi.org/10.1002/alz.70653}},
  doi          = {{10.1002/alz.70653}},
  volume       = {{21}},
  year         = {{2025}},
}