What are Common Data Elements?

Brief Description

Common Data Elements are a defined and standardized set of formats for variables that help to create consistency in data collection across studies.

Goals of using Common Data Elements in Brain-CODE

  • One of the Ontario Brain Institute's (OBI) key goals is to enable researchers to collaborate across disciplines, across institutions and across diseases.

  • An efficient comparison of data (analysis) can only be done when data are in the same format. To properly analyze the vast array of clinical, neuroimaging, and molecular data that will be stored in Brain-CODE, it has to be standardized.

Purpose of Common Data Elements

  • Common Data Elements (CDEs) help define and format the different types of variables that researchers analyze.

  • They allow for consistency in data collection across studies, improve quality of the data collected, and increase opportunities for sharing and cross-study analysis.

  • CDEs also optimize researchers’ ability to analyze large pools of data as well as to facilitate linking with external databases.

 

Brain-CODE’s Common Data Elements

Domain

Sub-Domain

CDE

Type

Administrative

Subject Enrollment

Brain-CODE
Subject Enrollment Form

Coordinator-led-entry

Patient
Characteristics

Demographic

Brain-CODE
Demographic Form

Coordinator-led-entry

Physical
and
Mental Health

Quality of Life

WHO-Qol-BREF
(adult)

Self-report

KINDL-R
(child & adolescent)

 Self-report/Proxy-report

Medical Comorbidity

NINDS Medical History

 Coordinator-led-entry

Psychiatric Comorbidity

BSI
(adolescent & adult)

 Self-report

Clinical
Endpoints

Depression

QIDS-SR
(adolescent & adult)

Self-report

RCADS
(child & adolescent)

Self-report/Proxy-report

Anxiety

GAD-7
(adolescent & adult)

Self-report

RCADS
(child & adolescent)

Self-report/Proxy-report

Sleep

PSQI
(adolescent & adult)

Self-report

CSHQ
(child)

Self-report/Proxy-report