One of OBI’s key goals is to enable researchers to collaborate across disciplines, across institutions and across disorders. OBI has established standards to help improve data quality and make data FAIR (findable, accessible, interoperable, and reusable).
Data Quality
OBI has developed a Data Quality Framework (DQF) to support quality data collection and generation. The Data Quality Framework documents can be accessed here:
DQF Stage 1: Design Training Testing
01. OBI Data Quality Framework - Stage 1 - Design Training Testing.pdf
02. OBI DQF Standard Protocol Requirements.pdf
03. OBI DQF Common Data Elements Guidelines.pdf
04. OBI DQF Data Management Plan Template.docx
05. OBI DQF Study Quality Checklist.docx
06. OBI DQF Data Collection, Assurance and Quality Training.pdf
Supporting Documents
OBI CDE Medical History - MedDRA Mapping.pdf
Training Materials
Introduction_Portal_Manual_2018.pdf
Introduction_SPReD_Manual_2018.pdf
LabKey_Data_Sharing_Manual_2018.pdf
Naming_Standards_Manual_2018.pdf
OBI DQF REDCap Tools & Procedures.pdf
REDCAP_Training_Manual_2018.pdf
Registry_Training_Manual_2018.pdf
SPReD_FileUpload_Training.pdf
DQF Stage 2: Collection Curation Completion
01. OBI Data Quality Framework - Stage 2 - Collection Curation Completion.pdf
02. OBI DQF Recommended Vocabularies.pdf
03. OBI DQF Data Quality Reporting Guide.pdf
Supporting Documents
OBI DQF Glossary of Terms and List of Acronyms.pdf
OBI DQF Missing Data Codes – Examples.pdf
OBI REDCap Data Quality Test Project
Templates
Missing Data Template.xlsx
OBI Data Transfer Plan Template.docx
Participant Status Template.xlsx
Standard Protocols and Consent Language
In order to collect data on Brain-CODE, data producers must adopt the standard consent language and protocol language in their consent forms and protocols. The following are available here:
Generic Consent Language for Brain-CODE (Jun 15, 2025)
Brain-CODE Generic Schematic (May 14, 2014)
OBI DQF Standard Protocol Requirements
Common Data Elements
Enabling researchers to collaborate across disciplines, across institutions and across diseases has the power to drive research discoveries like never before. To help achieve this level of collaboration, Brain-CODE Common Data Elements (CDEs) have been developed to provide standard definitions and formats so that researchers collect data consistently across studies. This will reduce variability in data collection and ultimately facilitate comparisons across diseases, merging of datasets, and meta-analyses.
Learn more about Brain-CODE's standardization approach.
The table below provides links to the Brain-CODE’s CDEs, including the instruments and data dictionaries.
*Last updated: 2024-02-16 (previous versions can be found here)
|
Domain |
Sub-Domain |
CDE |
Paper |
CDE |
REDCap |
Scoring |
| Core CDEs | ||||||
| Administrative | Subject Enrollment* | Brain-CODE Subject Enrollment Form |
 |
N/A |  |
N/A |
|
Patient |
Demographic* | Brain-CODE Demographic Form (Child) |
|
|
|
N/A |
| Brain-CODE Demographic Form (Adult) |
|
|
|
N/A | ||
| Physical and Mental Health |
Quality of Life | WHO-Qol-BREF (Adult) |
|
|
|
|
| KINDL-R (child & adolescent) |
|
 |
|
N/A | ||
| Medical Comorbidity* |
|
|
|
N/A |
||
| Recommended CDEs | ||||||
|
Clinical |
Depression | PHQ-9 (adolescent & adult) |
|
|
|
|
| RCADS (child & adolescent) |
|
|
|
|
||
| Anxiety | GAD-7 (adolescent & adult) |
|
|
|
|
|
| RCADS (child & adolescent) |
|
|
|
|
||
| Sleep | PSQI (adolescent & adult) |
|
|
|
|
|
| CSHQ (child) |
|
|
|
|
||