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

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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).

authors

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

publication date

  • January 2022