Common Data Elements to Facilitate Sharing and Re-use of Participant-Level Data: Assessment of Psychiatric Comorbidity Across Brain Disorders

Anthony L Vaccarino; Derek Beaton; Sandra E Black; Pierre Blier; Farnak Farzan; Elizabeth Finger; Jane A Foster; Morris Freedman; Benicio N Frey; Susan Gilbert Evans; Keith Ho; Mojib Javadi; Sidney H Kennedy; Raymond W Lam; Anthony E Lang; Bianca Lasalandra; Sara Latour; Mario Masellis; Roumen V Milev; Daniel J Müller; Douglas P Munoz; Sagar V Parikh; Franca Placenza; Susan Rotzinger; Claudio N Soares; Alana Sparks; Stephen C Strother; Richard H Swartz; Brian Tan; Maria Carmela Tartaglia; Valerie H Taylor; Elizabeth Theriault; Gustavo Turecki; Rudolf Uher; Lorne Zinman; Kenneth R Evans

doi:10.3389/fpsyt.2022.816465

Common Data Elements to Facilitate Sharing and Re-use of Participant-Level Data: Assessment of Psychiatric Comorbidity Across Brain Disorders

Front Psychiatry. 2022 Feb 7:13:816465. doi: 10.3389/fpsyt.2022.816465. eCollection 2022.

Authors

Anthony L Vaccarino¹, Derek Beaton^{2

3}, Sandra E Black^{4

5}, Pierre Blier⁶, Farnak Farzan⁷, Elizabeth Finger⁸, Jane A Foster⁹, Morris Freedman³, Benicio N Frey^{9

10}, Susan Gilbert Evans¹, Keith Ho¹¹, Mojib Javadi¹, Sidney H Kennedy¹², Raymond W Lam¹³, Anthony E Lang^{14

15}, Bianca Lasalandra¹, Sara Latour¹, Mario Masellis¹⁴, Roumen V Milev¹⁶, Daniel J Müller^{12

17}, Douglas P Munoz¹⁸, Sagar V Parikh¹⁹, Franca Placenza¹¹, Susan Rotzinger^{11

12}, Claudio N Soares²⁰, Alana Sparks¹, Stephen C Strother^{1

3}, Richard H Swartz^{4

5}, Brian Tan³, Maria Carmela Tartaglia²¹, Valerie H Taylor²², Elizabeth Theriault²³, Gustavo Turecki²⁴, Rudolf Uher²⁵, Lorne Zinman⁵, Kenneth R Evans¹

Affiliations

¹ Indoc Research, Toronto, ON, Canada.
² Data Science and Advanced Analytics, St. Michael's Hospital, Unity Health Toronto, Toronto, ON, Canada.
³ Rotman Research Institute, Baycrest Health Sciences, Toronto, ON, Canada.
⁴ Hurvitz Brain Sciences Research Program, Dr. Sandra Black Centre for Brain Resilience and Recovery, Sunnybrook Research Institute, University of Toronto, Toronto, ON, Canada.
⁵ Department of Medicine (Neurology), Sunnybrook Health Sciences Centre, University of Toronto, Toronto, ON, Canada.
⁶ Mood Disorders Research Unit, University of Ottawa Institute of Mental Health Research, Ottawa, ON, Canada.
⁷ School of Mechatronic Systems Engineering, Simon Fraser University, Surrey, BC, Canada.
⁸ Department of Clinical Neurological Sciences, Schulich School of Medicine and Dentistry, University of Western Ontario, London, ON, Canada.
⁹ Department of Psychiatry and Behavioural Neurosciences, McMaster University, Hamilton, ON, Canada.
¹⁰ Mood Disorders Program and Women's Health Concerns Clinic, St. Joseph's Healthcare, Hamilton, ON, Canada.
¹¹ Department of Psychiatry, University Health Network, Toronto, ON, Canada.
¹² Department of Psychiatry, University of Toronto, Toronto, ON, Canada.
¹³ Department of Psychiatry, University of British Columbia, Vancouver, BC, Canada.
¹⁴ Division of Neurology, Department of Medicine, University of Toronto, Toronto, ON, Canada.
¹⁵ Edmond J. Safra Program in Parkinson's Disease, University Health Network, Toronto, ON, Canada.
¹⁶ Departments of Psychiatry and Psychology, Queen's University, Providence Care, Kingston, ON, Canada.
¹⁷ Centre for Addiction and Mental Health, Campbell Family Mental Health Research Institute, Toronto, ON, Canada.
¹⁸ Centre for Neuroscience Studies, Queen's University, Kingston, ON, Canada.
¹⁹ Department of Psychiatry, University of Michigan, Ann Arbor, MI, United States.
²⁰ Department of Psychiatry, Queen's University, Kingston, ON, Canada.
²¹ Tanz Centre for Research in Neurodegenerative Diseases University of Toronto, Toronto, ON, Canada.
²² Department of Psychiatry, Cumming School of Medicine, University of Calgary, Calgary, AB, Canada.
²³ Ontario Brain Institute, Toronto, ON, Canada.
²⁴ Douglas Mental Health University Institute, McGill University, Montreal, QC, Canada.
²⁵ Department of Psychiatry, Dalhousie University, Halifax, NS, Canada.

Abstract

The Ontario Brain Institute's "Brain-CODE" is a large-scale informatics platform designed to support the collection, storage and integration of diverse types of data across several brain disorders as a means to understand underlying causes of brain dysfunction and developing novel approaches to treatment. By providing access to aggregated datasets on participants with and without different brain disorders, Brain-CODE will facilitate analyses both within and across diseases and cover multiple brain disorders and a wide array of data, including clinical, neuroimaging, and molecular. To help achieve these goals, consensus methodology was used to identify a set of core demographic and clinical variables that should be routinely collected across all participating programs. Establishment of Common Data Elements within Brain-CODE is critical to enable a high degree of consistency in data collection across studies and thus optimize the ability of investigators to analyze pooled participant-level data within and across brain disorders. Results are also presented using selected common data elements pooled across three studies to better understand psychiatric comorbidity in neurological disease (Alzheimer's disease/amnesic mild cognitive impairment, amyotrophic lateral sclerosis, cerebrovascular disease, frontotemporal dementia, and Parkinson's disease).

Keywords: brain-code; common data elements; data sharing; depression and anxiety; major depressive disorder; neurological disorders; pooled participant data; psychiatric comorbidity.

Copyright © 2022 Vaccarino, Beaton, Black, Blier, Farzan, Finger, Foster, Freedman, Frey, Gilbert Evans, Ho, Javadi, Kennedy, Lam, Lang, Lasalandra, Latour, Masellis, Milev, Müller, Munoz, Parikh, Placenza, Rotzinger, Soares, Sparks, Strother, Swartz, Tan, Tartaglia, Taylor, Theriault, Turecki, Uher, Zinman and Evans.