Open science datasets from PREVENT-AD, a longitudinal cohort of pre-symptomatic Alzheimer's disease

Jennifer Tremblay-Mercier; Cécile Madjar; Samir Das; Alexa Pichet Binette; Stephanie O M Dyke; Pierre Étienne; Marie-Elyse Lafaille-Magnan; Jordana Remz; Pierre Bellec; D Louis Collins; M Natasha Rajah; Veronique Bohbot; Jeannie-Marie Leoutsakos; Yasser Iturria-Medina; Justin Kat; Richard D Hoge; Serge Gauthier; Christine L Tardif; M Mallar Chakravarty; Jean-Baptiste Poline; Pedro Rosa-Neto; Alan C Evans; Sylvia Villeneuve; Judes Poirier; John C S Breitner; PREVENT-AD Research Group

doi:10.1016/j.nicl.2021.102733

Open science datasets from PREVENT-AD, a longitudinal cohort of pre-symptomatic Alzheimer's disease

Neuroimage Clin. 2021:31:102733. doi: 10.1016/j.nicl.2021.102733. Epub 2021 Jun 17.

Authors

Jennifer Tremblay-Mercier¹, Cécile Madjar², Samir Das³, Alexa Pichet Binette⁴, Stephanie O M Dyke⁵, Pierre Étienne⁶, Marie-Elyse Lafaille-Magnan⁷, Jordana Remz⁸, Pierre Bellec⁹, D Louis Collins¹⁰, M Natasha Rajah¹¹, Veronique Bohbot¹², Jeannie-Marie Leoutsakos¹³, Yasser Iturria-Medina¹⁴, Justin Kat¹⁵, Richard D Hoge¹⁶, Serge Gauthier¹⁷, Christine L Tardif¹⁸, M Mallar Chakravarty¹⁹, Jean-Baptiste Poline²⁰, Pedro Rosa-Neto²¹, Alan C Evans²², Sylvia Villeneuve²³, Judes Poirier²⁴, John C S Breitner²⁵; PREVENT-AD Research Group

Affiliations

¹ StoP-AD Centre, Douglas Mental Health Institute Research Centre, Montréal, QC, Canada. Electronic address: Jennifer.tremblay-mercier@douglas.mcgill.ca.
² StoP-AD Centre, Douglas Mental Health Institute Research Centre, Montréal, QC, Canada; McGill Centre for Integrative Neuroscience, Montreal Neurological Institute, McGill University, Montréal, QC, Canada. Electronic address: cecile.madjar@mcin.ca.
³ McGill Centre for Integrative Neuroscience, Montreal Neurological Institute, McGill University, Montréal, QC, Canada. Electronic address: samir.das@mcgill.ca.
⁴ StoP-AD Centre, Douglas Mental Health Institute Research Centre, Montréal, QC, Canada; McGill University, Montréal, QC, Canada. Electronic address: alexa.pichetbinette@mail.mcgill.ca.
⁵ McGill Centre for Integrative Neuroscience, Montreal Neurological Institute, McGill University, Montréal, QC, Canada; McGill University, Montréal, QC, Canada; McConnell Brain Imaging Center, Montreal Neurological Institute, McGill University, Montréal, QC, Canada. Electronic address: stephanie.dyke@mcgill.ca.
⁶ StoP-AD Centre, Douglas Mental Health Institute Research Centre, Montréal, QC, Canada; McGill University, Montréal, QC, Canada. Electronic address: pierre.emile.etienne.med@ssss.gouv.qc.ca.
⁷ StoP-AD Centre, Douglas Mental Health Institute Research Centre, Montréal, QC, Canada; McGill University, Montréal, QC, Canada; Centre for Child Development and Mental Health, Jewish General Hospital. Montréal, QC, Canada. Electronic address: elyse.lafaille-magnan@mail.mcgill.ca.
⁸ StoP-AD Centre, Douglas Mental Health Institute Research Centre, Montréal, QC, Canada. Electronic address: jordana.remz.comtl@ssss.gouv.qc.ca.
⁹ CRIUGM - Université de Montréal, Montréal, QC, Canada; Université de Montréal, Montréal, QC, Canada. Electronic address: pierre.bellec@criugm.qc.ca.
¹⁰ McGill University, Montréal, QC, Canada; McConnell Brain Imaging Center, Montreal Neurological Institute, McGill University, Montréal, QC, Canada. Electronic address: louis.collins@mcgill.ca.
¹¹ StoP-AD Centre, Douglas Mental Health Institute Research Centre, Montréal, QC, Canada; McGill University, Montréal, QC, Canada. Electronic address: maria.rajah@mcgill.ca.
¹² StoP-AD Centre, Douglas Mental Health Institute Research Centre, Montréal, QC, Canada; McGill University, Montréal, QC, Canada. Electronic address: veronique.bohbot@mcgill.ca.
¹³ John Hopkins University School of Medicine, Baltimore, MD, USA,. Electronic address: jeannie-marie@jhu.edu.
¹⁴ McGill Centre for Integrative Neuroscience, Montreal Neurological Institute, McGill University, Montréal, QC, Canada; McGill University, Montréal, QC, Canada; McConnell Brain Imaging Center, Montreal Neurological Institute, McGill University, Montréal, QC, Canada. Electronic address: yasser.iturriamedina@mcgill.ca.
¹⁵ StoP-AD Centre, Douglas Mental Health Institute Research Centre, Montréal, QC, Canada; McGill Centre for Integrative Neuroscience, Montreal Neurological Institute, McGill University, Montréal, QC, Canada. Electronic address: justin.kat@mail.mcgill.ca.
¹⁶ McGill Centre for Integrative Neuroscience, Montreal Neurological Institute, McGill University, Montréal, QC, Canada; McGill University, Montréal, QC, Canada; McConnell Brain Imaging Center, Montreal Neurological Institute, McGill University, Montréal, QC, Canada; Université de Montréal, Montréal, QC, Canada. Electronic address: rick.hoge@mcgill.ca.
¹⁷ StoP-AD Centre, Douglas Mental Health Institute Research Centre, Montréal, QC, Canada; McGill University, Montréal, QC, Canada; McGill University Research Centre for Studies in Aging, McGill University, Montréal, QC, Canada. Electronic address: serge.gauthier@mcgill.ca.
¹⁸ McGill University, Montréal, QC, Canada; McConnell Brain Imaging Center, Montreal Neurological Institute, McGill University, Montréal, QC, Canada. Electronic address: christine.tardif@mcgill.ca.
¹⁹ StoP-AD Centre, Douglas Mental Health Institute Research Centre, Montréal, QC, Canada; McGill University, Montréal, QC, Canada. Electronic address: mallar.chakravarty@douglas.mcgill.ca.
²⁰ McGill Centre for Integrative Neuroscience, Montreal Neurological Institute, McGill University, Montréal, QC, Canada; McGill University, Montréal, QC, Canada; McConnell Brain Imaging Center, Montreal Neurological Institute, McGill University, Montréal, QC, Canada. Electronic address: jean-baptiste.poline@mcgill.ca.
²¹ StoP-AD Centre, Douglas Mental Health Institute Research Centre, Montréal, QC, Canada; McGill University, Montréal, QC, Canada; McConnell Brain Imaging Center, Montreal Neurological Institute, McGill University, Montréal, QC, Canada; McGill University Research Centre for Studies in Aging, McGill University, Montréal, QC, Canada. Electronic address: pedro.rosa@mcgill.ca.
²² StoP-AD Centre, Douglas Mental Health Institute Research Centre, Montréal, QC, Canada; McGill Centre for Integrative Neuroscience, Montreal Neurological Institute, McGill University, Montréal, QC, Canada; McGill University, Montréal, QC, Canada; McConnell Brain Imaging Center, Montreal Neurological Institute, McGill University, Montréal, QC, Canada. Electronic address: alan.evans@mcgill.ca.
²³ StoP-AD Centre, Douglas Mental Health Institute Research Centre, Montréal, QC, Canada; McGill Centre for Integrative Neuroscience, Montreal Neurological Institute, McGill University, Montréal, QC, Canada; McGill University, Montréal, QC, Canada; McConnell Brain Imaging Center, Montreal Neurological Institute, McGill University, Montréal, QC, Canada. Electronic address: sylvia.villeneuve@mcgill.ca.
²⁴ StoP-AD Centre, Douglas Mental Health Institute Research Centre, Montréal, QC, Canada; McGill University, Montréal, QC, Canada. Electronic address: judes.poirier@mcgill.ca.
²⁵ StoP-AD Centre, Douglas Mental Health Institute Research Centre, Montréal, QC, Canada; McGill University, Montréal, QC, Canada. Electronic address: john.breitner@mcgill.ca.

Abstract

To move Alzheimer Disease (AD) research forward it is essential to collect data from large cohorts, but also make such data available to the global research community. We describe the creation of an open science dataset from the PREVENT-AD (PResymptomatic EValuation of Experimental or Novel Treatments for AD) cohort, composed of cognitively unimpaired older individuals with a parental or multiple-sibling history of AD. From 2011 to 2017, 386 participants were enrolled (mean age 63 years old ± 5) for sustained investigation among whom 349 have retrospectively agreed to share their data openly. Repositories are findable through the unified interface of the Canadian Open Neuroscience Platform and contain up to five years of longitudinal imaging data, cerebral fluid biochemistry, neurosensory capacities, cognitive, genetic, and medical information. Imaging data can be accessed openly at https://openpreventad.loris.ca while most of the other information, sensitive by nature, is accessible by qualified researchers at https://registeredpreventad.loris.ca. In addition to being a living resource for continued data acquisition, PREVENT-AD offers opportunities to facilitate understanding of AD pathogenesis.

Keywords: Biomarkers; Cerebrospinal Fluid proteins; Neuroimaging; Observational cohort; Open Science; Pre-symptomatic Alzheimer Disease.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Alzheimer Disease*
Amyloid beta-Peptides
Biomarkers
Canada
Humans
Middle Aged
Retrospective Studies
tau Proteins

Substances

Amyloid beta-Peptides
Biomarkers
tau Proteins