TY - JOUR
T1 - Open science datasets from PREVENT-AD, a longitudinal cohort of pre-symptomatic Alzheimer's disease
AU - PREVENT-AD Research Group
AU - Tremblay-Mercier, Jennifer
AU - Madjar, Cécile
AU - Das, Samir
AU - Pichet Binette, Alexa
AU - Dyke, Stephanie O.M.
AU - Étienne, Pierre
AU - Lafaille-Magnan, Marie Elyse
AU - Remz, Jordana
AU - Bellec, Pierre
AU - Louis Collins, D.
AU - Natasha Rajah, M.
AU - Bohbot, Veronique
AU - Leoutsakos, Jeannie Marie
AU - Iturria-Medina, Yasser
AU - Kat, Justin
AU - Hoge, Richard D.
AU - Gauthier, Serge
AU - Tardif, Christine L.
AU - Mallar Chakravarty, M.
AU - Poline, Jean Baptiste
AU - Rosa-Neto, Pedro
AU - Evans, Alan C.
AU - Villeneuve, Sylvia
AU - Poirier, Judes
AU - Breitner, John C.S.
N1 - Funding Information:
PREVENT-AD was launched in 2011 as a $13.5 million, 7-year public-private partnership using funds provided by McGill University, the Fonds de Recherche du Québec – Santé (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. 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/). CONP was launched in 2018 and is funded, in part, by Brain Canada. Thanks to all the financial resources.
Funding Information:
PREVENT-AD was launched in 2011 as a $13.5 million, 7-year public-private partnership using funds provided by McGill University, the Fonds de Recherche du Qu?bec ? Sant? (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. 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/). CONP was launched in 2018 and is funded, in part, by Brain Canada. Thanks to all the financial resources. PREVENT-AD is the result of efforts of many other co-investigators from a range of academic institutions and private corporations, as well as an extraordinarily dedicated and talented clinical and technical assistant staff, students, and post-doctoral fellows. Here is listed the entire PREVENT-AD Research Group: https://preventad.loris.ca/acknowledgements/acknowledgements.php?date = [2017-12-01]. The authors thank David Fontaine, PhD, who oversaw cognitive testing at enrollment, scored the RBANS cognitive evaluations, and administered additional cognitive evaluations when indicated. In Dr. Judes Poirier's laboratory we wish to mention the good work that has been carried out by Anne Labont?, Doris Dea, Louise Th?roux, and Cynthia Picard for CSF biomarker analyses, genotyping and more. Melissa Appleby, Laura Mahar, Miranda Tuwaig, Marie-Elyse Lafaille-Magnan, Christina Kazazian, Tanya Lee, Galina Pogossova, Renuka Giles, and Karen Wan collected cognitive and neurosensory data, assisted with the MRI sessions, entered data in LORIS and worked hard to obtain a high-quality dataset, thanks to them. Drs. Tharick Ali Pascoal, Marina Tedeshi Dauar, and Laksanun Cheewakriengkrai, dedicated time and energy to assist during LPs and performed neurological assessments with the research participants. Special thanks go to Marianne Dufour, administrative assistant, and to the clinical team; Ginette Mayrand, Joanne Frenette, Val?rie Gervais, Isabelle Vall?e, Rana El-Khoury, Leslie-Ann Daoust and Fabiola Ferdinand, all nurses who met with participants and were devoted to our participant's well-being. Not to forget, everyone working on data analysis, including Jeannie-Marie Leoutsakos for the development of the APS and Melissa Savard, the PREVENT-AD data analyst. We thank Benoit Jutras, PhD, from Universit? de Montreal, for gifting us equipment to test central auditory processing. The authors would like to acknowledge the continued support and participation of the Canadian Open Neuroscience Platform (CONP) in making the PREVENT-AD database accessible to the scientific community. Also, the Healthy Brains for Healthy Lives (HBHL) initiative at McGill provided platform support for the PREVENT-AD project, through its NeuroHub IT infrastructure. We give an additional thanks to the LORIS team, at the Montreal Neurological Institute, who recently accelerated our involvement in broader data sharing, for the benefit of the community. The authors acknowledge the generosity and commitment of all research participants who volunteered for this work and placed their trusts and hope in this research program.
Publisher Copyright:
© 2021 The Authors
PY - 2021/1
Y1 - 2021/1
N2 - 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.
AB - 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.
KW - Biomarkers
KW - Cerebrospinal Fluid proteins
KW - Neuroimaging
KW - Observational cohort
KW - Open Science
KW - Pre-symptomatic Alzheimer Disease
UR - http://www.scopus.com/inward/record.url?scp=85111118252&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85111118252&partnerID=8YFLogxK
U2 - 10.1016/j.nicl.2021.102733
DO - 10.1016/j.nicl.2021.102733
M3 - Article
C2 - 34192666
AN - SCOPUS:85111118252
SN - 2213-1582
VL - 31
JO - NeuroImage: Clinical
JF - NeuroImage: Clinical
M1 - 102733
ER -