Frontiers in Psychiatry (Feb 2022)
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,
- Derek Beaton,
- Sandra E. Black,
- Sandra E. Black,
- Pierre Blier,
- Farnak Farzan,
- Elizabeth Finger,
- Jane A. Foster,
- Morris Freedman,
- Benicio N. Frey,
- Benicio N. Frey,
- Susan Gilbert Evans,
- Keith Ho,
- Mojib Javadi,
- Sidney H. Kennedy,
- Raymond W. Lam,
- Anthony E. Lang,
- Anthony E. Lang,
- Bianca Lasalandra,
- Sara Latour,
- Mario Masellis,
- Roumen V. Milev,
- Daniel J. Müller,
- Daniel J. Müller,
- Douglas P. Munoz,
- Sagar V. Parikh,
- Franca Placenza,
- Susan Rotzinger,
- Susan Rotzinger,
- Claudio N. Soares,
- Alana Sparks,
- Stephen C. Strother,
- Stephen C. Strother,
- Richard H. Swartz,
- Richard H. Swartz,
- Brian Tan,
- Maria Carmela Tartaglia,
- Valerie H. Taylor,
- Elizabeth Theriault,
- Gustavo Turecki,
- Rudolf Uher,
- Lorne Zinman,
- Kenneth R. Evans
Affiliations
- Anthony L. Vaccarino
- Indoc Research, Toronto, ON, Canada
- Derek Beaton
- Data Science and Advanced Analytics, St. Michael's Hospital, Unity Health Toronto, Toronto, ON, Canada
- Derek Beaton
- Rotman Research Institute, Baycrest Health Sciences, Toronto, ON, Canada
- Sandra E. Black
- Hurvitz Brain Sciences Research Program, Dr. Sandra Black Centre for Brain Resilience and Recovery, Sunnybrook Research Institute, University of Toronto, Toronto, ON, Canada
- Sandra E. Black
- Department of Medicine (Neurology), Sunnybrook Health Sciences Centre, University of Toronto, Toronto, ON, Canada
- Pierre Blier
- Mood Disorders Research Unit, University of Ottawa Institute of Mental Health Research, Ottawa, ON, Canada
- Farnak Farzan
- School of Mechatronic Systems Engineering, Simon Fraser University, Surrey, BC, Canada
- Elizabeth Finger
- Department of Clinical Neurological Sciences, Schulich School of Medicine and Dentistry, University of Western Ontario, London, ON, Canada
- Jane A. Foster
- Department of Psychiatry and Behavioural Neurosciences, McMaster University, Hamilton, ON, Canada
- Morris Freedman
- Rotman Research Institute, Baycrest Health Sciences, Toronto, ON, Canada
- Benicio N. Frey
- Department of Psychiatry and Behavioural Neurosciences, McMaster University, Hamilton, ON, Canada
- Benicio N. Frey
- 0Mood Disorders Program and Women's Health Concerns Clinic, St. Joseph's Healthcare, Hamilton, ON, Canada
- Susan Gilbert Evans
- Indoc Research, Toronto, ON, Canada
- Keith Ho
- 1Department of Psychiatry, University Health Network, Toronto, ON, Canada
- Mojib Javadi
- Indoc Research, Toronto, ON, Canada
- Sidney H. Kennedy
- 2Department of Psychiatry, University of Toronto, Toronto, ON, Canada
- Raymond W. Lam
- 3Department of Psychiatry, University of British Columbia, Vancouver, BC, Canada
- Anthony E. Lang
- 4Division of Neurology, Department of Medicine, University of Toronto, Toronto, ON, Canada
- Anthony E. Lang
- 5Edmond J. Safra Program in Parkinson's Disease, University Health Network, Toronto, ON, Canada
- Bianca Lasalandra
- Indoc Research, Toronto, ON, Canada
- Sara Latour
- Indoc Research, Toronto, ON, Canada
- Mario Masellis
- 4Division of Neurology, Department of Medicine, University of Toronto, Toronto, ON, Canada
- Roumen V. Milev
- 6Departments of Psychiatry and Psychology, Queen's University, Providence Care, Kingston, ON, Canada
- Daniel J. Müller
- 2Department of Psychiatry, University of Toronto, Toronto, ON, Canada
- Daniel J. Müller
- 7Centre for Addiction and Mental Health, Campbell Family Mental Health Research Institute, Toronto, ON, Canada
- Douglas P. Munoz
- 8Centre for Neuroscience Studies, Queen's University, Kingston, ON, Canada
- Sagar V. Parikh
- 9Department of Psychiatry, University of Michigan, Ann Arbor, MI, United States
- Franca Placenza
- 1Department of Psychiatry, University Health Network, Toronto, ON, Canada
- Susan Rotzinger
- 1Department of Psychiatry, University Health Network, Toronto, ON, Canada
- Susan Rotzinger
- 2Department of Psychiatry, University of Toronto, Toronto, ON, Canada
- Claudio N. Soares
- 0Department of Psychiatry, Queen's University, Kingston, ON, Canada
- Alana Sparks
- Indoc Research, Toronto, ON, Canada
- Stephen C. Strother
- Indoc Research, Toronto, ON, Canada
- Stephen C. Strother
- Rotman Research Institute, Baycrest Health Sciences, Toronto, ON, Canada
- Richard H. Swartz
- Hurvitz Brain Sciences Research Program, Dr. Sandra Black Centre for Brain Resilience and Recovery, Sunnybrook Research Institute, University of Toronto, Toronto, ON, Canada
- Richard H. Swartz
- Department of Medicine (Neurology), Sunnybrook Health Sciences Centre, University of Toronto, Toronto, ON, Canada
- Brian Tan
- Rotman Research Institute, Baycrest Health Sciences, Toronto, ON, Canada
- Maria Carmela Tartaglia
- 1Tanz Centre for Research in Neurodegenerative Diseases University of Toronto, Toronto, ON, Canada
- Valerie H. Taylor
- 2Department of Psychiatry, Cumming School of Medicine, University of Calgary, Calgary, AB, Canada
- Elizabeth Theriault
- 3Ontario Brain Institute, Toronto, ON, Canada
- Gustavo Turecki
- 4Douglas Mental Health University Institute, McGill University, Montreal, QC, Canada
- Rudolf Uher
- 5Department of Psychiatry, Dalhousie University, Halifax, NS, Canada
- Lorne Zinman
- Department of Medicine (Neurology), Sunnybrook Health Sciences Centre, University of Toronto, Toronto, ON, Canada
- Kenneth R. Evans
- Indoc Research, Toronto, ON, Canada
- DOI
- https://doi.org/10.3389/fpsyt.2022.816465
- Journal volume & issue
-
Vol. 13
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
- common data elements
- psychiatric comorbidity
- major depressive disorder
- neurological disorders
- data sharing
- pooled participant data
