1. CIFASD Informatics Core Update
June 1, 2016
Bill Barnett, PI
Helen Yezerets, Lead Developer

2. Refresher: CIFASD Informatics Core
Charter:
A U24 Core that serves the entire CIFASD consortium
The steward of CIFASD data
The lead organization in the development of CIFASD data standards
A service for the collection and centralization of CIFASD data
A service for integrative studies of CIFASD data
Team:
Bill Barnett, Principal Investigator
Helen Yezerets, Primary Developer
Andy Arenson, Senior Developer
Acknowledgements:
(Valuable Feedback and Guidance)
Dr. Mattson, Dr. Chambers, and Dr. Sowell
Bill, I have identified the slides which we carried over from last year with a sub-title “Refresher”.

3. Aims Aim 1: Continued cyberinfrastructure support
Aim 2: Collection of additional data sets
Aim 3: Support of affiliated projects
Novel Informatics Support for CIFASD Community

4. Aim 1
Aim 1.1: Provide data management and integration and lead the ongoing development of the CIFASD data dictionary, architectures for managing CIFASD data, and tools for data quality improvement and exploratory data analysis.
Aim 1.2: Provide reporting support to the Administrative Core to track consortium progress.

5. Data Analysis and Reports
Aim 1
May 2016 Updates
Aim Updates
Data Collection
Data Query
Data Analysis and Reports
Data Management
Data Dictionary
Access Input Tool
Infant Neuro
2nd Interview
XML Export
Aggregation of additional data from CIFASD clinical research projects into the CIFASD Central Repository (CR), improving the functionality of data collection standards and tools, and assisting CIFASD investigators with data integration needs for cross-study analyses.
Data collection and Impact:
Updated 3D Facial data dictionary based on Mike Suttie’s and Leah Wetherill’s request
Updated discrepancies reports and provided automation empty records updates to various datasets to improve quality of the data uploaded to the CR.
Dysmorphology
Discrepancies Report
3D Facial Imaging
Example: Upload records with/out Measurements [Dr. Foroud and Dr. Hammond groups]

6. Data Analysis and Reports
Aim 1
May 2016 Updates
Data Collection
Data Query
Data Analysis and Reports
Data Management
Cross Query
Data query
DAN Availability included
DNA Availability

7. DNA Availability

8. Aim 1 May 2016 Updates Data Collection Data Query
Data Analysis and Reports
Data Management
Data per gender, ethnicity, totals for individual site, and the combined totals per all sites in accordance with the NIH form [Dr. Mattson]
Report of Race-Gender-Ethnicity
Report :Developed a dynamic report for “Race-Gender-Ethnicity” that depicts data per gender, ethnicity , totals for individual site, and the combined totals per all sites in accordance with the NIH form.
Included this report on the Central Repository 'Reports' page

9. Aim 1 May 2016 Updates Aim 1 2016 Updates Data Collection Data Query
Data Analysis and Reports
Data Management
Data Cleansing
Secure box.iu.edu storage
Updates to Access input tools
[Dr. Chambers’ Group]
Data Management
Delete erroneous records
secure storage on the box.iu.edu: to streamline exchange of Access input tools between CIFASD ‘power’ users

10. Collection of additional data sets.
Aim 2
Collection of additional data sets.
Aim 2.1: Create additional software tools to incorporate new datasets for modalities that are already present in the Central Repository.
Aim 2.2: Modify existing, or develop new, technology solutions and create additional software tools to incorporate datasets for entirely new modalities of data.

11. Aim 2 May 2016 Updates DNA Availability (483) 3D Facial Images
New Data Sets in CR
DNA Availability
(483)
3D Facial Images
with measurements
(623)
without measurements
(263)
Updated data upload, duplicate checking, and download functionality for 3D Facial Image with or without Measurements. Uploaded 623 new 3D facial measurements and 263 records without measurements to the CR. Updated existing variable names, cleaned up invalid variables in the 3D Facial Imaging data dictionary and central repository.
Provided new DNA Availability dataset. Uploaded 483 records to CR

12. Support affiliated projects.
Aim 3
Support affiliated projects.
Aim 3.1: Create a permissions system so that data from affiliated studies may be securely shared.
Aim 3.2: Work with affiliated studies to allow their data to be integrated into the central repository or otherwise compared with CIFASD project data, if affiliate study data are not structured or described in the same fashion as CIFASD studies.
Novel Informatics Support for CIFASD Community

13. Phase I + II Phase I External Access
Finalized identification of Phase II data by projects and sites in preparation for providing data access to the external researchers.
Designed and implemented a section on the public cifasd website (cifasd.org) that provides external researchers with granular access to CIFASD Phase I and II data based on their signed agreement with CIFASD consortium.

14. Future Efforts Improvements of Query Performance
Legacy emphasis
Near-term emphasis
Long-term emphasis
Data Management
Improvements of Query Performance
Training and Consultations
Data Collection
Data Analysis and Reports
External Requests
Completeness of Demographics Data
Manual
Improve Cross Query
Publications
Completed projects depicted in green.
Submitted article to Elsevier: Journal of Biomedical Informatics (end of April)
The Informatics Core will continue to work with the entire consortium to provide new data input, management, and output services, understand the ongoing needs for software tools and their development, provide better tools for data analysis, and ensure data quality. As needs change and the scope of data coming into the Central Repository expands, there will be a continued need for Informatics Core staff to assist researchers with data uploads and data cleansing in the central repository. There also will be new needs for tool modification as data upload needs, methodologies, or contributing sites change. As projects create new data types, such as genomic data, and affiliate projects create data integration requirements, the Informatics Core stands ready to assist in those endeavors in terms of data normalization, management, and reuse.
The focus of the consortium continues to shift from the emphasis on collecting to analyzing and comparing data among affiliated projects. The Informatics Core will continue to be a facilitator for CIFASD clinical projects, support existing data submissions, and develop technical solutions for cross-study and/or cross-modality data analysis. In addition to modifying existing input and upload tools, we will shift focus to improving query and analytical capabilities for both hypothesis-driven analysis and quality assurance.
The Informatics Core will also continue to work to support data quality improvements by fine-tuning existing reports and providing new analytics, summaries, and visualizations of CIFASD data.
Finally, we will commit our resources for provisioning of CIFASD data for external requests, consultations and training. The Informatics Core will manage the new process for external investigators to gain access to CIFASD data and to oversee the data sharing process. The Informatics Core will also provision data to external investigators and provide long term archiving of derived data sets and other informatics services as per the CIFASD Data Use Agreement.
Track 3D Images with DNA
Phase II Data for External Researchers
Data Analytics & Visualizations

15. Aim 3 May 2016 Novel Services Example of Initial Version of
Decision Tree Survey
Example of
Stigma of Mental Illness Survey
Interactive Visualization Platform
Mobile app for Recruitment Consent and Data Entry
Novel services potentially provided by Informatics Core

16. Created an initial version of decision tree survey https://redcap.uits.iu.edu/surveys/?s=RDCKK9D73P

17. Branching logic is implemented based on the flowchart.
Fields dynamically appear according to the flowchart logic
Created an initial version of decision tree survey
Branching logic is implemented based on the flowchart.

18. Stigma of Mental Illness Survey
Example of
Stigma of Mental Illness Survey
The College Toolbox Project survey, developed using REDCap surveys by Andy Arenson, was used to create a separate, test version of the survey using the questions used in the original survey, that can be accessed via <
In order to access hidden branching questions  one would need to choose 'Yes' on the following question:
“Have you ever known someone you are close to, including yourself, who has been treated badly or unfairly because of a physical, mental, or social characteristic?”
Indiana University, is the first university to embark on this mission, organized a campaign to reduce the stigma associated with mental illness. The project is called “U Bring Change 2 Mind College Toolbox Project” (
Goal: to "develop, field-test and evaluate a range of approaches to changing attitudes about mental illness and mental health."
The anti-stigma activist and acclaimed actress Glenn Close is invested in this mission and connected with IU Bloomington through Bernice Pescosolido Distinguished Professor of Sociology in the College of Arts and Sciences and a leading researcher on the stigma associated with mental illness.
The testing of anti-stigma tactics will begin this summer on the freshmen students and will continue for four years. The tactics that are effective will go “into the toolbox” and be made available, free of charge, for other colleges and universities to adapt and use. The manager of the College Toolbox Project is Susan Barnett.

19. Interactive Visualization Platform
Maternal Alcohol Use around Time of Conception
Maternal Alcohol Use Two Weeks prior to Initial Survey
Maternal Alcohol Use during Follow-up Survey
DATASETS
FILTERS
Child’s Weight
Gestational Age
Socioeconomic
Status
Child’s Head Circumference
For Dr. Chambers group: visualize maternal alcohol drinking during three point of analysis:
-around the time of conception
-two week prior the first interview
-two weeks prior the second interview
The datasets will be initially dynamically filtered through:
Gestational age
Hollingshead SES categories
Child’s Head circumference at Birth
Child’s Weight at Birth
Child’s Height as Birth
The resulting datasets will be presented as trajectories of alcohol consumption with potential identification of patterns
Patterns of maternal alcohol use during pregnancy

20. Questions? Thank you! The CIFASD Informatics Core
Helen Yezerets
Bill Barnett
We anticipate that the upcoming renewal period will be signified by data provisioning not only for internal CIFASD users, but also for external users. We are excited about the possibility that incorporation of new data types, such as genomic data, will enable in better understanding FAS. Finally, we believe that cross data analytics and data visualization will play significant role in better understanding the relationship among data and in pursuing the scientific goals of CIFASD.