Collaborative Initiative on Fetal Alcohol Spectrum Disorders (CI-FASD)
CI-FASD brings together leading researchers from around the world to standardize the collection of data related to Fetal Alcohol Spectrum Disorders and accumulate a critical mass of patients and data from a wide variety of backgrounds in order to discover novel diagnostic and therapeutic procedures. Many different types of data are being collected, including results from physical exams, neurobehavioral tests, detailed questionnaires, ultrasounds, brain scans, two-dimensional photographs, and three-dimensional surface maps.
Informatics CoreIndiana University is creating the informatics software for the collaboration, including input tools for assuring that the initial capture of data from various sources is correct and a central repository with a variety of tools for submitting, querying and analyzing data.
- (FASD-DysmoInput) The input tools are sophisticated database programs that include the ability to input data from computerized tests, demand double-entry
verification for manually input data, and provide both immediate and on-demand consistency checking. With projects in many parts of the world without reliable internet
access, the input tools must be stand-alone programs. The input tools can be quite complex, dealing with more than 800 variables across twenty different tests in the case
of neurobehavioral data, and must also be output data in a standard format for transmission to the central repository.
- The central repository acts as a final gatekeeper to assure only correct data is submitted and provides the critical ability to access data from across populations.
The submission tool does a variety of consistency checking and provides an interface for users to decide how to proceed when uncertainties are detected. Data is available
for download in a variety of formats.
- Indiana University was chosen to be the Informatics Core for CI-FASD in part because of the excellent IT services that could be leveraged for use in the project. The
Informatics Core is able to take advantage of already existing services for resilient data storage, database services, and application hosting services that are available
to any researcher at Indiana University.
This project utilizes 3D surface scanning technology from Indiana University to supplement traditional physical measurements in the diagnosis and study of fetal alcohol syndrome (FAS). Through the use of 3D scanning, the project seeks to develop new methods for assessing facial variations to provide more accurate diagnoses of the level of alcohol exposure. Moreover, by organizing the surface scans of subjects and control individuals in a database, researchers will be able to perform novel queries, comparisons, and longitudinal studies.