Matthew J. McAuliffe, Ph.D., Chief, Biomedical Imaging Research Services Section (BIRSS) CIT
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Transcript of Matthew J. McAuliffe, Ph.D., Chief, Biomedical Imaging Research Services Section (BIRSS) CIT
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Matthew J. McAuliffe, Ph.D., Chief, Biomedical Imaging Research Services Section (BIRSS) CIT
Ramona Hicks, Ph.D., Program Director, Repair and Plasticity NIH/NINDS
Douglas Gibson, Ph.D., Deputy Neurotrauma Research Coordinator USAMRMC-CCCRP (RAD2)
Federal Interagency Traumatic Brain Injury Research (FITBIR)
Informatics System
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Why do we bring all this data together?
to replicate experiments
to ask new questions
to simulate
to model
to share
to publish
to teach
to search
to analyze
to visualize
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The FITBIR framework is a collaborative biomedical informatics system to support research at NIH to accelerate scientific discovery and treatment. The mission of BRICS is accomplished by the:
1. Definition of standards to enable cross site meta-analysis and data comparisons (e.g. NINDS CDEs)
2. Deployment of useful tools for community adoption 3. Promotion for the sharing of quality research data
throughout the research community 4. Central Repository and Portal to phenotypic, genomic,
imaging and pedigree data.
FITBIR
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BRICS Components
Clinical Trial / Research• Defining electronic case
report forms• Scheduling and collecting
clinical data• Exporting, analyzing and
reporting on collected data.
Study Management and Data Submission• Defining and managing
study information and access
• Contributing, uploading, and storing the research data
• Define federated data stores
Querying, Reporting and Exporting Data• Include locally collected
research data• Include research data
from defined, federated sites.
Defining and Validating Data• Creating, managing, and
searching data elements and form structures
• Validating research data against the defined validation rules
Global Unique Identifier System• Allows researchers to share data
specific to study participants• Correlate participants across
studies without exposing personally identifiable information (PII)
User Account Management• Creating, approving, and
managing user accounts• Managing access controls,
roles & permissions• Single sign on
MIPAV Imaging Tool• Image submission tool• Image analysis tools• 3D Image visualization
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Generic
Forms Tool
(eCRF)
ProFoRM
(eCRF+)
RESTFUL API
GUIDRepository
ManagerData Access
GUID Webstart
Client
Data Dictionary
NINDS CDEs,
Unique DE
Validation Webstart Tool
Upload Tool Download MgrQuery Tool
Meta
DataRaw Data
Export
Package
Query
Results
Data Submission Data Access
FITBIR Arch
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Generic
Forms Tool
(eCRF)
ProFoRM
(eCRF+)
RESTFUL API
GUIDRepository
ManagerData Access
GUID Webstart
Client
Data Dictionary
NINDS CDEs,
Unique DE
Validation Webstart Tool
Upload Tool Download MgrQuery Tool
Meta
DataRaw Data
Export
Package
Query
Results
Data Submission Data Access
FITBIR Arch
Data Analytics
(Big Data)
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Submission Dataflow
• VALIDATE & SUBMIT • RESEARCHER USE • COLLABORATION • QUALIFIED ACCESS• CAPTURE
• NEUROIMAGING
• GENOMICS
• ASSESSMENT DATA
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Researcher System GUID client application
Researcher/ Clerk
PII3
4
5
CIT Hosting (Bldg 12)
GUID Server
GUID
Public Data Repository
Public DBGUIDa + DataGUIDb + Data
...
Researcher
6
One-WayHashes
Query
7 Data
GIUD + Data
GUID DBGUIDa + HashesGUIDb + Hashes
...
2
1
Researcher System GUID client application
Researcher/ Clerk
PII3
4
5
CIT Hosting (Bldg 12)
GUID Server
GUID
Public Data Repository
Public DBGUIDa + DataGUIDb + Data
...
Researcher
6
One-WayHashes
Query
7 Data
GIUD + Data
GUID DBGUIDa + HashesGUIDb + Hashes
...
2
1
Researcher System GUID client application
Researcher/ Clerk
PII3
4
5
CIT Hosting (Bldg 12)
GUID Server
GUID
Public Data Repository
Public DBGUIDa + DataGUIDb + Data
...
Researcher
6
One-WayHashes
Query
7 Data
GIUD + Data
GUID DBGUIDa + HashesGUIDb + Hashes
...
2
1
• Researcher logs into GUID client on their university PC and enters in subject PII
Researcher System GUID client application
Researcher/ Clerk
PII3
4
5
CIT Hosting (Bldg 12)
GUID Server
GUID
Public Data Repository
Public DBGUIDa + DataGUIDb + Data
...
Researcher
6
One-WayHashes
Query
7 Data
GIUD + Data
GUID DBGUIDa + HashesGUIDb + Hashes
...
2
1
Researcher System GUID client application
Researcher/ Clerk
PII3
4
5
CIT Hosting (Bldg 12)
GUID Server
GUID
Public Data Repository
Public DBGUIDa + DataGUIDb + Data
...
Researcher
6
One-WayHashes
Query
7 Data
GIUD + Data
GUID DBGUIDa + HashesGUIDb + Hashes
...
2
1
• GUID client (on university computer) uses personnaly identifiable information to derive a series of one way hashes which securely encrypt PII information
Researcher System GUID client application
Researcher/ Clerk
PII3
4
5
CIT Hosting (Bldg 12)
GUID Server
GUID
Public Data Repository
Public DBGUIDa + DataGUIDb + Data
...
Researcher
6
One-WayHashes
Query
7 Data
GIUD + Data
GUID DBGUIDa + HashesGUIDb + Hashes
...
2
1
Researcher System GUID client application
Researcher/ Clerk
PII3
4
5
CIT Hosting (Bldg 12)
GUID Server
GUID
Public Data Repository
Public DBGUIDa + DataGUIDb + Data
...
Researcher
6
One-WayHashes
Query
7 Data
GIUD + Data
GUID DBGUIDa + HashesGUIDb + Hashes
...
2
1
• One way hashes are sent off to the GUID server for reference and storage. No personally identifiable information is sent to the system
Researcher System GUID client application
Researcher/ Clerk
PII3
4
5
CIT Hosting (Bldg 12)
GUID Server
GUID
Public Data Repository
Public DBGUIDa + DataGUIDb + Data
...
Researcher
6
One-WayHashes
Query
7 Data
GIUD + Data
GUID DBGUIDa + HashesGUIDb + Hashes
...
2
1
Researcher System GUID client application
Researcher/ Clerk
PII3
4
5
CIT Hosting (Bldg 12)
GUID Server
GUID
Public Data Repository
Public DBGUIDa + DataGUIDb + Data
...
Researcher
6
One-WayHashes
Query
7 Data
GUID + Data
GUID DBGUIDa + HashesGUIDb + Hashes
...
2
1
• GUID server returns a GUID identifier. If the one way hashes match a known subject, an existing GUID will be returned. If this is a new subject, a new GUID will be returned.
Researcher System GUID client application
Researcher/ Clerk
PII3
4
5
CIT Hosting (Bldg 12)
GUID Server
GUID
Public Data Repository
Public DBGUIDa + DataGUIDb + Data
...
Researcher
6
One-WayHashes
Query
7 Data
GIUD + Data
GUID DBGUIDa + HashesGUIDb + Hashes
...
2
1
Researcher System GUID client application
Researcher/ Clerk
PII3
4
5
CIT Hosting (Bldg 12)
GUID Server
GUID
Public Data Repository
Public DBGUIDa + DataGUIDb + Data
...
Researcher
6
One-WayHashes
Query
7 Data
GUID + Data
GUID DBGUIDa + HashesGUIDb + Hashes
...
2
1
• Once the researcher has a GUID, s/he may submit data associated with this subject. No data may be submitted to the system without a GUID.
Researcher System GUID client application
Researcher/ Clerk
PII3
4
5
CIT Hosting (Bldg 12)
GUID Server
GUID
Public Data Repository
Public DBGUIDa + DataGUIDb + Data
...
Researcher
6
One-WayHashes
Query
7 Data
GIUD + Data
GUID DBGUIDa + HashesGUIDb + Hashes
...
2
1
Researcher System GUID client application
Researcher/ Clerk
PII3
4
5
CIT Hosting (Bldg 12)
GUID Server
GUID
Public Data Repository
Public DBGUIDa + DataGUIDb + Data
...
Researcher
6
One-WayHashes
Query
7 Data
GUID + Data
GUID DBGUIDa + HashesGUIDb + Hashes
...
2
1
Researcher System GUID client application
Researcher/ Clerk
PII3
4
5
CIT Hosting (Bldg 12)
GUID Server
GUID
Public Data Repository
Public DBGUIDa + DataGUIDb + Data
...
Researcher
6
One-WayHashes
Query
7 Data
GIUD + Data
GUID DBGUIDa + HashesGUIDb + Hashes
...
2
1
Researcher System GUID client application
Researcher/ Clerk
PII3
4
5
CIT Hosting (Bldg 12)
GUID Server
GUID
Public Data Repository
Public DBGUIDa + DataGUIDb + Data
...
Researcher
6
One-WayHashes
Query
7 Data
GUID + Data
GUID DBGUIDa + HashesGUIDb + Hashes
...
2
1
• Researchers are able to access data across studies, without revealing personally identifiable information, while correlating study data across different studies AND uniquely sorting between distinct and redundant datasets
Shared
Shared Data
Repository
GUID
• Once data is in the database, a researcher may query this data. The GUID allows researchers to distinguish between unique subjects and recurrent subjects across all datasets.