1. Informatics Core 2015 CIFASD Annual Meeting Bill Barnett
PI, Informatics Core
March 19, 2015

2. Outline A CIFASD Informatics Core charter, services and resources
Structure of the overall multi-component CIFASD application
Recent developments
Central repository expansion (on-going)
Phase I data identification and implementation
Enhanced data security
Input tools improvements and streamlining
Planned Activities
Migration to Virtual Machines
External data access
Cross-query redesign B C D
June 4, 2018

3. CIFASD Informatics Core
Charter:
A U24 Informatics Services Core that supports CIFASD
The lead in the development of CIFASD data standards
A service for the collection and management of CIFASD data
A service for integrative studies of CIFASD data
Team:
Bill Barnett, Principal Investigator
Helen Yezerets, Primary Developer
Andy Arenson, Senior Developer
Ganesh Shankar, Project Manager
Bill, I have identified the slides which we carried over from last year with a sub-title “Refresher”. Perhaps some of these slides can be hidden or moved to the Appendix, if you have limited time.
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June 4, 2018

4. Informatics Core U24 Aims
Aim 1: Continued cyberinfrastructure support
Aim 2: Collection of additional data sets
Aim 3: Support of affiliated projects
Bill, I have identified the slides which we carried over from last year with a sub-title “Refresher”. Perhaps some of these slides can be hidden or moved to the Appendix, if you have limited time.
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June 4, 2018

5. Informatics Core Principles
We serve the needs of the consortium first and foremost.
We are stewards of data, but not data owners
We ensure standards are established and work across the consortium, but do not determine the standards
We ensure the safe, long term storage of CIFASD data
Bill, I have identified the slides which we carried over from last year with a sub-title “Refresher”. Perhaps some of these slides can be hidden or moved to the Appendix, if you have limited time.
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June 4, 2018

6. What Services We Offer Develop Input and Upload Tools
Develop data standards for integrative research
Manage the Core Repository
Develop tools for data quality and download.
Assist in data upload, management, and download
(Soon): Provide CIFASD data to external researchers
Bill, I have identified the slides which we carried over from last year with a sub-title “Refresher”. Perhaps some of these slides can be hidden or moved to the Appendix, if you have limited time.
June 4, 2018

7. What Services We Offer - Facilities
Oracle Enterprise Relational Database Management System (RDBMS)
Core Repository of CIFASD research data
Archival services on a 15.7 Petabyte hierarchical storage infrastructure
High performance computing for data intensive research applications
Bill, I have identified the slides which we carried over from last year with a sub-title “Refresher”. Perhaps some of these slides can be hidden or moved to the Appendix, if you have limited time.
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June 4, 2018

8. A
General Activities
The CIFASD monthly data report continues to inform the Administrative Core about the progress that has been made regarding uploading data in the Central Repository.
The Informatics Core leads the CIFASD Data Access Committee, charged with developing and implementing policies, procedures, and methods to share CIFASD data beyond the consortium.
Bill, I have identified the slides which we carried over from last year with a sub-title “Refresher”. Perhaps some of these slides can be hidden or moved to the Appendix, if you have limited time.
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June 4, 2018

9. CIFASD Informatics Core StructureB
Input Tools
Manual data entry, import, and xml export
Web Component
(cifasd.uits.iu.edu)
Documentation
Data dictionaries; Access input tools; Manuals; License
(MS Access)
Dysmorphology
Neurobehavior III
Preschool Neurobehavior
Infant Neurobehavior
Alcohol & Control
Demographics
Eating Habits
Follow-up / Outcome
Ultrasound
Screener
Upload (Perl)
Parsing and duplicate checking; Constraints verification
Central Repository (CR) (Oracle)
CR Excerpt (Oracle)
Bill,
How about we use this slide as a Graphical Outline for the presentation? Then, on the following slides, we will be using it to introduce specific individual updates
I would suggest spending some time, walking the attendees through this slide. I think that even those who have been involved in the project from the very beginning, may not realize how many different components are present in the application
Queries
(Perl)
Multiple datasets
Save Report functionality
Reports
(ApEx)
DemGroupClass, Tallies, etc.
External Access
(ApEx)
(xml / mdl)
3D Facial Imaging
Brain Imaging

10. Recent Developments: Input Tools
Applied additional variables and updated data format for Eating Habits, Dysmorphology and Preschool Neurobehavior datasets (Chambers request)
Modified CVLT import function for the Neurobehavior Access input tool (Mattson request)
Follow-up/Outcome, Ultrasound and Screener datasets (Chambers request):
Created XML upload functionality and discrepancies reports
June 4, 2018

11. Recent Developments: Central Repository
Analyzed Central Repository and provided detailed information on distribution of Phase I data by projects and sites for external users.
Improved identification process for Exposure, Dysmorphology, Demographics, Brain Imaging, and 3D Facial Imaging data gathered during Phases I through III to streamline the multi-table query and to provide future access to the Phase I data for external users.
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June 4, 2018

12. Continued… Central Repository
Updated depiction of Prenatal Child Exposure, Prenatal Source Exposure, Recruited Child Group to incorporate old and new values from the Dysmorphology and Exposure datasets (Mattson request).
Follow-up/Outcome, Ultrasound and Screener datasets (Chambers request)
Working on the web mechanism to upload and download data to and from the Central Repository.
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June 4, 2018

13. Continued… Central Repository
Provided DemGroupClass, Dysmorphology, Brain and 3D Face Imaging tables in relation to Neurobehavior Phase data by implementing a multi-table query (Mattson request).
Implemented ‘Save Report’ option to assist researchers in efficient retrieval of the previous data queries (Mattson request).
‘Save Report’ function to be extended to all queries.
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June 4, 2018

14. Continued… Central Repository
The Tallies Completeness Report had the following enhancements and modifications (Mattson request):
Added admin dates for Tallies% report for Phase III.
Improved tallies history chart with the timeline of recorded tally results.
Updated number of months to default to the latest thirteen months.
The DemGroupClass Report was modified to reflect updated Demographics records for Phase I
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June 4, 2018

15. D
Planned Activities
Continue providing maintenance, changes, and enhancements to various software tools, particularly Phase III data.
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June 4, 2018

16. D
Planned Activities
Continue providing maintenance, changes, and enhancements to various software tools, particularly Phase III data.
Finalize upload/download Central Repository mechanisms for the Follow-up/Outcome, Ultrasound, and Screener datasets (Chambers request).
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June 4, 2018

17. D
Planned Activities
Continue providing maintenance, changes, and enhancements to various software tools, particularly Phase III data.
Finalize upload/download Central Repository mechanisms for the Follow-up/Outcome, Ultrasound, and Screener datasets.
Report the date of the last data upload in relation to specific datasets (Foroud request).
Request from Tatiana to report the dat
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June 4, 2018

18. D
Planned Activities
Continue providing maintenance, changes, and enhancements to various software tools, particularly Phase III data.
Finalize upload/download Central Repository mechanisms for the Follow-up/Outcome, Ultrasound, and Screener datasets.
Report the date of the last data upload in relation to specific datasets.
Analyze, design and implement secure granular data access to Phase I dataset for researchers outside of CIFASD
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June 4, 2018

19. Design: Role-Based Access Control Model for External User Access
Additional security features, for example:
verification of the users; limiting number of invalid login attempts; access period; etc.
Role-Specific Details: External Users will have granular access to select de-identified datasets, based on signed agreement
Bill, I have included the scheme based on my understanding of the Committee expectations. I am not suggesting that you walk through the scheme in any details during the presentation. Only a few items need to be pointed out, and I have marked them on the slide using call-out boxes.
June 4, 2018

20. Planned Activities… More
Cross-Query re-design
Structure of the database presents a challenge for full cross-query implementation; exploring alternative routes, for example via ApEx
Migration to Virtual Machines (VM) to enhance application security and stability
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June 4, 2018

21. Questions? Thank you! Customize footer: View menu/Header and Footer
June 4, 2018

22. CIFASD Data Access Committee
Barnett (Chair), Chambers, Dunty, Foroud, Mattson, Sowell, Thomas
June 4, 2018

23. Data Access Committee Goals:
To provide external investigators with access to CIFASD data in order to further the aims of CIFASD.
To support multidisciplinary research projects to better inform approaches aimed at developing effective intervention and treatment for FASD.
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June 4, 2018

24. Data Access Committee Key Features:
Compliant with NIH Data Sharing Policy (NOT-OD )
Data Access Committee reviews Data Access Requests
Governed by the CIFASD Steering Committee and NIAAA
Makes available ‘Completed Phases’ of CIFASD data
Proposals must have IRB approval and Institutional Authorization
Currently planning to provide de-identified data
June 4, 2018

25. Data Access Committee Status (http://cifasd.org/data-sharing/):
Data Sharing Policy – DONE
Data Sharing website – DONE
Online Data Access Request – DONE
Data Use Agreement – IN PROCESS
Define Data to be shared – IN PROCESS
Data Sharing Process – IN PROCESS
June 4, 2018

26. Data Use Agreement
A legal agreement signed by the PI and an Institutional Authorizer that determines the rules for use of CIFASD data.
Currently being developed by the Data Access Committee.
June 4, 2018

27. Define Data to be Shared
Data whose collection and analysis by CIFASD investigators is completed.
Currently Phase I.
Do we need to finalize definition of exactly what Phase I data are?
Is there a schedule for Phase II data?
June 4, 2018

28. Data Sharing Process
The process by which data are made available to external researchers, including governance, reporting, citation, etc.
Procedures currently being developed by Informatics Core.
What is process for tracking external projects?
What are metrics for reporting on the activities of external projects?
June 4, 2018

29. Other Issues for the Data Access Committee?
What Standards for sharing, security, etc. will we adhere to?
Do all data need to be in the CR to be shared?
June 4, 2018