Characteristics of the Ontario Neurodegenerative Disease Research Initiative cohort

Kelly M Sunderland; Derek Beaton; Stephen R Arnott; Peter Kleinstiver; Donna Kwan; Jane M Lawrence-Dewar; Joel Ramirez; Brian Tan; Robert Bartha; Sandra E Black; Michael Borrie; Donald Brien; Leanne K Casaubon; Brian C Coe; Benjamin Cornish; Allison A Dilliott; Dar Dowlatshahi; Elizabeth Finger; Corinne Fischer; Andrew Frank; Julia Fraser; Morris Freedman; Barry Greenberg; David A Grimes; Ayman Hassan; Wendy Hatch; Robert A Hegele; Christopher Hudson; Mandar Jog; Sanjeev Kumar; Anthony Lang; Brian Levine; Wendy Lou; Jennifer Mandzia; Connie Marras; William McIlroy; Manuel Montero-Odasso; David G Munoz; Douglas P Munoz; Joseph B Orange; David S Park; Stephen H Pasternak; Frederico Pieruccini-Faria; Tarek K Rajji; Angela C Roberts; John F Robinson; Ekaterina Rogaeva; Demetrios J Sahlas; Gustavo Saposnik; Christopher J M Scott; Dallas Seitz; Christen Shoesmith; Thomas D L Steeves; Michael J Strong; Stephen C Strother; Richard H Swartz; Sean Symons; David F Tang-Wai; Maria Carmela Tartaglia; Angela K Troyer; John Turnbull; Lorne Zinman; Paula M McLaughlin; Mario Masellis; Malcolm A Binns; ONDRI Investigators

doi:10.1002/alz.12632

Characteristics of the Ontario Neurodegenerative Disease Research Initiative cohort

Alzheimers Dement. 2023 Jan;19(1):226-243. doi: 10.1002/alz.12632. Epub 2022 Mar 30.

Authors

Kelly M Sunderland¹, Derek Beaton¹, Stephen R Arnott¹, Peter Kleinstiver², Donna Kwan³, Jane M Lawrence-Dewar⁴, Joel Ramirez⁵, Brian Tan¹, Robert Bartha^{6

7}, Sandra E Black^{5

8}, Michael Borrie^{2

9}, Donald Brien³, Leanne K Casaubon^{8

10}, Brian C Coe³, Benjamin Cornish¹¹, Allison A Dilliott^{2

6}, Dar Dowlatshahi^{12

13}, Elizabeth Finger^{2

14}, Corinne Fischer¹⁵, Andrew Frank^{12

16}, Julia Fraser¹¹, Morris Freedman^{1

8

17}, Barry Greenberg¹⁸, David A Grimes^{12

13}, Ayman Hassan⁴, Wendy Hatch^{19

20}, Robert A Hegele^{2

6}, Christopher Hudson^{20

21}, Mandar Jog²², Sanjeev Kumar^{23

24}, Anthony Lang²⁵, Brian Levine^{1

8

26}, Wendy Lou²⁷, Jennifer Mandzia^{2

28}, Connie Marras²⁵, William McIlroy¹¹, Manuel Montero-Odasso^{2

14

29}, David G Munoz¹⁵, Douglas P Munoz³, Joseph B Orange³⁰, David S Park^{31

32}, Stephen H Pasternak^{9

33}, Frederico Pieruccini-Faria^{2

14

29}, Tarek K Rajji^{23

24}, Angela C Roberts^{30

34}, John F Robinson^{2

6}, Ekaterina Rogaeva³⁵, Demetrios J Sahlas³⁶, Gustavo Saposnik^{8

15}, Christopher J M Scott⁵, Dallas Seitz³⁷, Christen Shoesmith²², Thomas D L Steeves³⁸, Michael J Strong^{2

39}, Stephen C Strother^{1

40}, Richard H Swartz^{5

8}, Sean Symons^{5

41}, David F Tang-Wai^{8

42}, Maria Carmela Tartaglia^{35

42}, Angela K Troyer^{26

43}, John Turnbull³⁶, Lorne Zinman^{5

8}, Paula M McLaughlin^{3

44}, Mario Masellis^{5

8}, Malcolm A Binns^{1

27}; ONDRI Investigators

Affiliations

¹ Rotman Research Institute, Baycrest Health Sciences, Toronto, Ontario, Canada.
² Schulich School of Medicine and Dentistry, Western University, London, Ontario, Canada.
³ Centre for Neuroscience Studies, Queen's University, Kingston, Ontario, Canada.
⁴ Thunder Bay Regional Health Research Institute, Thunder Bay, Ontario, Canada.
⁵ Sunnybrook Research Institute, Sunnybrook Health Sciences Centre, Toronto, Ontario, Canada.
⁶ Robarts Research Institute, Western University, London, Ontario, Canada.
⁷ Department of Medical Biophysics, Western University, London, Ontario, Canada.
⁸ Department of Medicine (Neurology), University of Toronto, Toronto, Ontario, Canada.
⁹ St. Joseph's Healthcare Centre, London, Ontario, Canada.
¹⁰ Toronto Western Hospital, Toronto, Ontario, Canada.
¹¹ Department of Kinesiology, University of Waterloo, Waterloo, Ontario, Canada.
¹² Department of Medicine, University of Ottawa, Ottawa, Ontario, Canada.
¹³ Ottawa Hospital Research Institute, Ottawa, Ontario, Canada.
¹⁴ Lawson Health Research Institute, London, Ontario, Canada.
¹⁵ Keenan Research Centre for Biomedical Research, Li Ka Shing Knowledge Institute, St. Michael's Hospital, Toronto, Ontario, Canada.
¹⁶ Bruyère Research Institute, Ottawa, Ontario, Canada.
¹⁷ Division of Neurology, Baycrest Health Sciences, Toronto, Ontario, Canada.
¹⁸ Department of Neurology, Johns Hopkins University School of Medicine, Baltimore, Maryland, USA.
¹⁹ Kensington Eye Institute, Toronto, Ontario, Canada.
²⁰ Department of Ophthalmology and Vision Sciences, University of Toronto, Toronto, Ontario, Canada.
²¹ School of Optometry and Vision Science, University of Waterloo, Waterloo, Ontario, Canada.
²² London Health Sciences Centre, London, Ontario, Canada.
²³ Campbell Family Mental Health Research Institute, Centre for Addiction and Mental Health, Toronto, Ontario, Canada.
²⁴ Department of Psychiatry, University of Toronto, Toronto, Ontario, Canada.
²⁵ Edmond J. Safra Program in Parkinson's Disease and the Morton and Gloria Shulman Movement Disorders Centre, Toronto Western Hospital, Toronto, Ontario, Canada.
²⁶ Department of Psychology, University of Toronto, Toronto, Ontario, Canada.
²⁷ Dalla Lana School of Public Health, University of Toronto, Toronto, Ontario, Canada.
²⁸ Department of Clinical Neurological Sciences, London Health Sciences Centre, London, Ontario, Canada.
²⁹ Gait and Brain Lab, Parkwood Institute, London, Ontario, Canada.
³⁰ School of Communication Sciences and Disorders, Elborn College, Western University, London, Ontario, Canada.
³¹ Hotchkiss Brain Institute, Calgary, Alberta, Canada.
³² Department of Clinical Neurosciences, University of Calgary, Calgary, Alberta, Canada.
³³ Cognitive Neurology and Alzheimer's Disease Research Centre, Parkwood Institute, London, Ontario, Canada.
³⁴ Roxelyn and Richard Pepper Department of Communication Sciences and Disorders, Northwestern University, Evanston, Illinois, USA.
³⁵ Tanz Centre for Research in Neurodegenerative Diseases, University of Toronto, Toronto, Ontario, Canada.
³⁶ Department of Medicine, McMaster University, Hamilton, Ontario, Canada.
³⁷ Cumming School of Medicine, University of Calgary, Calgary, Alberta, Canada.
³⁸ Division of Neurology, St. Michael's Hospital, Toronto, Ontario, Canada.
³⁹ Canadian Institutes for Health Research, Ottawa, Ontario, Canada.
⁴⁰ Department of Medical Biophysics, University of Toronto, Toronto, Ontario, Canada.
⁴¹ Department of Medical Imaging, University of Toronto, Toronto, Ontario, Canada.
⁴² Krembil Research Institute, Toronto Western Hospital, Toronto, Ontario, Canada.
⁴³ Neuropsychology and Cognitive Health, Baycrest Health Sciences, Toronto, Ontario, Canada.
⁴⁴ Nova Scotia Health, Halifax, Nova Scotia, Canada.

PMID: 36318754
DOI: 10.1002/alz.12632

Abstract

Introduction: Understanding synergies between neurodegenerative and cerebrovascular pathologies that modify dementia presentation represents an important knowledge gap.

Methods: This multi-site, longitudinal, observational cohort study recruited participants across prevalent neurodegenerative diseases and cerebrovascular disease and assessed participants comprehensively across modalities. We describe univariate and multivariate baseline features of the cohort and summarize recruitment, data collection, and curation processes.

Results: We enrolled 520 participants across five neurodegenerative and cerebrovascular diseases. Median age was 69 years, median Montreal Cognitive Assessment score was 25, median independence in activities of daily living was 100% for basic and 93% for instrumental activities. Spousal study partners predominated; participants were often male, White, and more educated. Milder disease stages predominated, yet cohorts reflect clinical presentation.

Discussion: Data will be shared with the global scientific community. Within-disease and disease-agnostic approaches are expected to identify markers of severity, progression, and therapy targets. Sampling characteristics also provide guidance for future study design.

Keywords: Alzheimer's disease; Parkinson's disease; amnestic mild cognitive impairment; amyotrophic lateral sclerosis; cerebrovascular disease; cohort study; dementia; frontotemporal dementia spectrum disorder; neurodegenerative disease.

Publication types

Observational Study

MeSH terms

Activities of Daily Living
Aged
Alzheimer Disease*
Cognitive Dysfunction*
Cohort Studies
Humans
Longitudinal Studies
Male
Neurodegenerative Diseases* / epidemiology
Ontario