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

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).

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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.

Déclaration de conflit d'intérêts

Author RL has received honoraria for ad hoc speaking or advising/consulting, or received research funds, from Allergan, Asia-Pacific Economic Cooperation, BC Leading Edge Foundation, Canadian Institutes of Health Research, Canadian Network for Mood and Anxiety Treatments, Healthy Minds Canada, Janssen, Lundbeck, Lundbeck Institute, Michael Smith Foundation for Health Research, MITACS, Myriad Neuroscience, Ontario Brain Institute, Otsuka, Unity Health, Viatris, and VGH-UBCH Foundation. Author RM has received consulting and speaking honoraria from AbbVie, Allergan, Eisai, Janssen, KYE, Lallemand, Lundbeck, Neonmind, Otsuka, and Sunovion, and research grants from CAN-BIND, CIHR, Janssen, Lallemand, Lundbeck, Nubiyota, OBI, and OMHF. Author SP has received honoraria for consulting or research funds from Assurex (Myriad), Sage, Otsuka, Takeda, Janssen, Aifred, Mensante, Canadian Institutes for Health Research, Ontario Brain Institute, and the Flinn Foundation. Author SB has received honoraria for ad hoc advising for Hoffman LaRoche, and Biogen Canada, and speaker honoraria from Biogen Canada, and in-kind support from Lilly-Avid and GEHealthcare. The remaining authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.