1. Accelerate Biomedical Discovery
Using BRICS & CDEs to
Accelerate Biomedical Discovery
Through Data Sharing
Matthew J. McAuliffe, PhD
Chief, Biomedical Imaging Research Services Section (BIRSS) CIT

2. To Accelerate Discovery
Why share data?
To Model Data
To Efficiently use
Resources
To Ask New Questions
To Accelerate Discovery
To Teach
To Stimulate Discussion
To Learn
WE’RE BUILDING A NEW SYSTEM to address these research challenges
To Visualize
To Replicate Experiments

3. Defines and Validates Data
BRICS Modules
Defines and Validates Data
Creates, manages, and searches data elements and form structures
Validates research data against the defined validation rules
Global Unique Identifier System
Allows researchers to share data specific to study participants
Correlates participants across studies without exposing personally identifiable information (PII)
Study Management and Data Submission
Defines and manages study information and access
Contributes, uploads, and stores the research data
Defines federated data stores
Clinical Trial / Research
Defines electronic case report forms
Schedules and collects clinical data
Exports, analyzes and reports on collected data
MIPAV Imaging Data Submission
Image submission tool
Image analysis tool
3D Image visualization
Query, Report and Export Data
Includes locally collected research data
Includes research data from defined, federated sites
Key elements of the system (illustrate and discuss benefits of each)
Data Dictionary (CDEs) [solves X problem(s) - illustrate]
Data Repository [solves y problem(s) – illustrate]
GUID [solves z problem(s) – illustrate]
Open Architecture: Application Programming Interface (API)
PROFORMS
QUERY
Meta Study (Nov 2015)
DOI reference
Analyzed data
Meta data defined by BD2K/BioCaddie
Commons compliant

4. Submission Dataflow CAPTURE VALIDATE & SUBMIT RESEARCHER USE
COLLABORATION
SHARED ACCESS
NEUROIMAGING
GENOMICS
ASSESSMENT DATA

5. Data Dictionary NLM BMIC CDE WG PROMIS Neuro-QoL NIH toolbox PHENX
CDISC
ONC/SDC
REDCap
What it is
Informatics research system
What it does:
Provides software applications and services that solve research challenges and problems
Add informatics workflow

6. What it is
Informatics research system
What it does:
Provides software applications and services that solve research challenges and problems
Add informatics workflow

7. What it is
Informatics research system
What it does:
Provides software applications and services that solve research challenges and problems
Add informatics workflow

10. BRICS customized for specific projects
Federal Interagency Traumatic Brain Injury (FITBIR)
Overall award winner - Federal Health IT (FHIT)
Center for Neuroscience and Regenerative Medicine (CNRM)
Parkinson’s Disease Biomarker Program (PDBP)
Overall award winner – ACT-IAC
GUID brick deployed in support of GRDR
CiSTAR – NINDS intramural program
What it is
Informatics research system
What it does:
Provides software applications and services that solve research challenges and problems
Add informatics workflow

11. PDBP Data Management Resource (DMR)
What is the PDBP DMR?
The PDBP Data Management Resource (PDBP DMR) and NINDS Biorepository collaborate to support new and existing research promoting biomarker discovery for Parkinson's disease.

12. (funded by DOD and NINDS)
FITBIR
(funded by DOD and NINDS)
Number of Subjects
Total = 4,603 subjects as of April 15, 2015

13. Number of Data Records by Category
FITBIR
Number of Data Records by Category

14. Lessons Standard use of standardized forms/CDEs
NIH standard CDEs for demographics (Age, Height, Gender (not so easy), Weight, …)
Mapping tool that maps CDEs in library A to CDEs in library B and CDEa’s PVs to CDEb’s PVs
GenderVala.Male = Gndrb.M = gendCDISCc.1
Easy access to CDE libraries (PROMIS, CDISC) – NLM CDE tool is helping with the process