Informatics Core Report Collaborative Initiative on Fetal Alcohol Spectrum Disorders Andrew D. Arenson aarenson@iupui.edu 7 January 2009

Outline Supporting CIFASD Aims: September 25, 2017 Outline Supporting CIFASD Aims: Multidisciplinary approach examining the relationships among face, brain, and behavior Data in the Central Repository What’s been done? What’s coming next? Translational Science

Supporting CIFASD Aims September 25, 2017 Supporting CIFASD Aims Building “a subject population large enough to adequately address the questions posed by CIFASD’s goals” requires agreement amongst the various projects as to the type and meaning of data being collected. The Informatics Core facilitates this agreement through the creation of data dictionaries.

Supporting CIFASD Aims September 25, 2017 Supporting CIFASD Aims Providing “diagnostic criteria for the range of outcomes following prenatal brain exposure using physical, behavioral, and brain measures” requires having a place to store, share, and analyze these data. The Informatics Core provides Input Tools to capture these data and a Central Repository to store and share the data. The Informatics Core provides Cross-data queries that allow data to be compared among studies

How the software fits together September 25, 2017 How the software fits together The data dictionaries define the variables used everywhere.

Data Dictionary example September 25, 2017 Data Dictionary example Image by Yelena Yezerets

Data in the CIFASD Central Repository September 25, 2017 Data in the CIFASD Central Repository Records as of December 2, 2008. Numbers following ‘+’ reflect changes since September 30, 2008

September 25, 2017 What’s been done? Bold/Italics refers to change in status and/or significant work since June, 2008. Infant Neurobehavior refers to Bayley and Maternal Questionnairre variables only (not heart rate monitoring).

What’s been done -- Maintenance September 25, 2017 What’s been done -- Maintenance Loaded cleaned Dysmorphology data Updated Neurobehavior I Input/Upload Updated EEAC Input Updated Followup/Outcome Input

What’s been done -- Creation September 25, 2017 What’s been done -- Creation Fine-tuning Neuro II Input Created Neuro II Upload Created Demographics data dictionary, Input, and Upload Updated Cross Query – any subset of data from the central repository can now be chosen and downloaded for analysis

September 25, 2017 Demographics – Static

September 25, 2017 Demographics – Static2

Demographics – Alcohol September 25, 2017 Demographics – Alcohol

Demographics – Dynamic September 25, 2017 Demographics – Dynamic

Primary Record / Cross-Data Queries September 25, 2017 Primary Record / Cross-Data Queries Image by Michel Tavares

Repository Capabilities September 25, 2017 Repository Capabilities With cross-querying, we can now ask questions across multiple studies and modalities such as: For subjects that were given a FAS Status of ‘yes’, which recruitment were they in? How well do Dysmorphology examination measurements match 3D facial imaging measurements? What neuropsychological results correlate with prenatal alcohol exposure?

What’s coming next? Topic Actions Needs Goal Date Cross Query September 25, 2017 What’s coming next? Topic Actions Needs Goal Date Cross Query Expand selection choices User testing and feedback As needed Neurobehavior II Put Input and Upload Tools in production User final acceptance Jan 23, 2009 Demographics User testing and final acceptance Feb 6, 2009 Alcohol and Control Update Input Tool User requirements Feb 20, 2009 Followup / Outcome Mar 6, 2009 Put Upload Tool into production Mar 20, 2009

What’s coming next? Topic Actions Needs Goal Date Infant Neurobehavior September 25, 2017 What’s coming next? Topic Actions Needs Goal Date Infant Neurobehavior Add Physiology section User acceptance of data dictionary. Apr 3, 2009 Ultrasound Update for biophysical profiling variables User requirements May 1, 2009 Nutritional variables Update Alcohol and Control Update Followup / Outcome May 29, 2009 Put Input and Upload Tools in production Development of Upload Tool. User testing and final acceptance. Jun 25, 2009 A year ago at this time the bulk of the work to be done was code development, which we can estimate reasonably well. Now the bulk of the work to be done is responding to testing. This is harder to estimate both in terms of when we will get feedback about what needs to be done as well as how much will need to be done. We have moved into a period of being adaptable -- flexibly responding to requests for the bulk of our work, while continuing software development between requests. Needs in italics refer to tasks the Informatics Core must perform before later needs will arise.

Translational Science September 25, 2017 Translational Science Available to all, including Basic Science projects: Archive data via the IU Massive Data Storage System. Use SPSS and SAS on IU’s central systems. Share data via the IU Slashtmp service for sending files and IU’s Oncourse for a repository of files. What informatics work could help translational efforts?

September 25, 2017 Acknowledgements The work presented here was done by the CIFASD Informatics Core: Bill Barnett, PI Craig Stewart, Senior Investigator Andy Arenson, Project Manager Michel Tavares, Lead Developer Yelena Yezerets, Developer