Informatics Core Resources Available to the FASD Research Community

The Informatics Core, in collaboration with the rest of CIFASD, has developed a series of data dictionaries and input tools that can be used by any researcher interested in collecting similar data. They enable the various projects within CIFASD to share data and we encourage other projects interested in sharing data with CIFASD to take advantage of these standards and tools.

These data dictionaries and Input Tools are made freely available at:
https://cifasd.uits.iu.edu/downloads/downloads.html

If you have any questions or would like more information, please contact us at: cifasdic@iu.edu

Specific Tools include …

Data dictionaries describe the controlled vocabulary of the consortium, providing
variable names, labels, allowable values, and dependencies between variables.

Data
Dictionary
Dysmorphology https://cifasd.uits.iu.edu/downloads/dysmo/data_sharing/Dysmo_DataDictionary.xls
Alcohol & Control https://cifasd.uits.iu.edu/downloads/EEAC/data_sharing/EEAC_DataDictionary.xlsx
Neurobehavior I https://cifasd.uits.iu.edu/downloads/neuro/data_sharing/Neuro_DataDictionary.xls
Neurobehavior II https://cifasd.uits.iu.edu/downloads/neuroII/data_sharing/NeuroII_DataDictionary.xls
Neurobehavior III https://cifasd.uits.iu.edu/downloads/neuroIII/data_sharing/NeuroIII_DataDictionary.xlsx
Infant Neurobehavior https://cifasd.uits.iu.edu/downloads/infneuro/data_sharing/InfantNeuro_DataDictionary.xls
Preschool Neurobehavior https://cifasd.uits.iu.edu/downloads/infneuro/data_sharing/PreschoolNeuro_DataDictionary.xlsx
Demographics https://cifasd.uits.iu.edu/downloads/neuroIII/data_sharing/Demographics_DataDictionary.xls
Ultrasound https://cifasd.uits.iu.edu/downloads/ultrasound/data_sharing/Ultrasound_DataDictionary.xls
Screener https://cifasd.uits.iu.edu/downloads/screener/data_sharing/Screener_DataDictionary.xls
Follow-Up Outcome https://cifasd.uits.iu.edu/downloads/followup/data_sharing/Outcome_DataDictionary.xls
Eating Habits https://cifasd.uits.iu.edu/downloads/eathabits/data_sharing/EatingHabit_DataDictionary.xls
3D Facial Imaging https://cifasd.uits.iu.edu/downloads/3DFace/data_sharing/3DFI_DataDictionary.xls
Brain Imaging https://cifasd.uits.iu.edu/downloads/brain/data_sharing/BrainImaging_DataDictionary.xls

The Input Tools are Microsoft Access databases that provide electronic data entry forms for collecting data that conform to the data dictionaries.

Input Tools
Dysmorphology https://cifasd.uits.iu.edu/downloads/dysmo/data_sharing/Dysmorphology.zip
Alcohol & Control https://cifasd.uits.iu.edu/downloads/EEAC/data_sharing/EEAC.zip
Neurobehavior I https://cifasd.uits.iu.edu/downloads/neuro/data_sharing/Neurobehavior.zip
Neurobehavior II https://cifasd.uits.iu.edu/downloads/neuroII/data_sharing/NeurobehaviorII.zip
Neurobehavior III https://cifasd.uits.iu.edu/downloads/neuroIII/data_sharing/NeurobehaviorIII.zip
Infant Neurobehavior https://cifasd.uits.iu.edu/downloads/infneuro/data_sharing/InfantNeuro.zip
Preschool Neurobehavior https://cifasd.uits.iu.edu/downloads/infneuro/data_sharing/PreschoolNeuro.zip
Demographics https://cifasd.uits.iu.edu/downloads/neuroIII/data_sharing/Demographics.zip
Ultrasound https://cifasd.uits.iu.edu/downloads/ultrasound/data_sharing/Ultrasound.zip
Screener https://cifasd.uits.iu.edu/downloads/screener/data_sharing/Screener.zip
Follow-Up Outcome https://cifasd.uits.iu.edu/downloads/followup/data_sharing/Follow-Up-Outcome.zip
Eating Habits https://cifasd.uits.iu.edu/downloads/eathabits/data_sharing/EatingHabit.zip
3D Facial Imaging N/A
Brain Imaging N/A

The data dictionaries and Input Tools are organized around a series of types of data:

Dysmorphology: Physical exam data plus a small, select set of variables for prenatal exposure and recruitment group.

Dysmorphology
Data Dictionary https://cifasd.uits.iu.edu/downloads/dysmo/data_sharing/Dysmo_DataDictionary.xls
Input Tool https://cifasd.uits.iu.edu/downloads/dysmo/data_sharing/Dysmorphology.zip

Neurobehavior: Neuropsychological results for a battery of tests aimed at assessing academic achievement, behavioral and neurocognitive abilities. Neurobehavior I represents the eighteen exams used during CI-FASD’s first funding period. Neurobehavior II represents the fourteen exams, some of them overlapping with Neurobehavior I, used in CI-FASD’s second funding period, including multiple time tested information.

Neurobehavior I
Data Dictionary https://cifasd.uits.iu.edu/downloads/neuro/data_sharing/Neuro_DataDictionary.xls
Input Tool https://cifasd.uits.iu.edu/downloads/neuro/data_sharing/Neurobehavior.zip
Neurobehavior II
Data Dictionary https://cifasd.uits.iu.edu/downloads/neuroII/data_sharing/NeuroII_DataDictionary.xls
Input Tool https://cifasd.uits.iu.edu/downloads/neuroII/data_sharing/NeurobehaviorII.zip
Neurobehavior III
Data Dictionary https://cifasd.uits.iu.edu/downloads/neuroIII/data_sharing/NeuroIII_DataDictionary.xlsx
Input Tool https://cifasd.uits.iu.edu/downloads/neuroIII/data_sharing/NeurobehaviorIII.zip

Demographics: A more extensive set of demographic information then found in other datasets, including alcohol exposure and medication usage variables.

Demographics
Data Dictionary https://cifasd.uits.iu.edu/downloads/neuroIII/data_sharing/Demographics_DataDictionary.xls
Input Tool https://cifasd.uits.iu.edu/downloads/neuroIII/data_sharing/Demographics.zip

Infant Neurobehavior: Bayley variables, heart rate monitoring, and maternal questionnaire
variables.

Infant Neurobehavior
Data Dictionary https://cifasd.uits.iu.edu/downloads/infneuro/data_sharing/InfantNeuro_DataDictionary.xls
Input Tool https://cifasd.uits.iu.edu/downloads/infneuro/data_sharing/InfantNeuro.zip

Preschool Neurobehavior: Cardiac orienting response data, identical to that collected in Phase II except for the specific visual and auditory stimuli. A standard neurobehavioral testing battery (comparable to the 5-7 year old assessment) at the 3.5-4.5 years of age visit

Preschool Neurobehavior
Data Dictionary https://cifasd.uits.iu.edu/downloads/infneuro/data_sharing/PreschoolNeuro_DataDictionary.xlsx
Input Tool https://cifasd.uits.iu.edu/downloads/infneuro/data_sharing/PreschoolNeuro.zip

3D Facial Imaging: Measurements of facial features and coordinates taken from 3D facial imaging. No input tool is provided as data are entirely computer-generated.

3D Facial Imaging
Data Dictionary https://cifasd.uits.iu.edu/downloads/3DFace/data_sharing/3DFI_DataDictionary.xls
Input Tool N/A

Brain Imaging: Cortical and subcortical measurements of brain structures. No input tool is provided as data are entirely computer-generated.

Brain Imaging
Data Dictionary https://cifasd.uits.iu.edu/downloads/brain/data_sharing/BrainImaging_DataDictionary.xls
Input Tool N/A

Ultrasound: Demographics, anatomic survey, biophysical profile (BPP), and startle response variables.

Ultrasound
Data Dictionary https://cifasd.uits.iu.edu/downloads/ultrasound/data_sharing/Ultrasound_DataDictionary.xls
Input Tool https://cifasd.uits.iu.edu/downloads/ultrasound/data_sharing/Ultrasound.zip

Screener: Demographics, pregnancy, and substance abuse variables for a prospective study.

Screener
Data Dictionary https://cifasd.uits.iu.edu/downloads/screener/data_sharing/Screener_DataDictionary.xls
Input Tool https://cifasd.uits.iu.edu/downloads/screener/data_sharing/Screener.zip

Alcohol & Control: also known as First Interview Maternal Questionnaire includes demographics, pregnancy, paternal/maternal alcohol usage, maternal knowledge, relationships, substance abuse, maternal drug use, and biomarker variables.

Alcohol & Control
Data Dictionary https://cifasd.uits.iu.edu/downloads/EEAC/data_sharing/EEAC_DataDictionary.xlsx
Input Tool https://cifasd.uits.iu.edu/downloads/EEAC/data_sharing/EEAC.zip

Follow-Up/Outcome: also known as Second Interview Maternal Questionnaire includes outcome of pregnancy, infant information, and recent maternal alcohol use variables.

Follow-Up Outcome
Data Dictionary https://cifasd.uits.iu.edu/downloads/followup/data_sharing/Outcome_DataDictionary.xls
Input Tool https://cifasd.uits.iu.edu/downloads/followup/data_sharing/Follow-Up-Outcome.zip

Eating Habits: growth measures, measures of sleep disturbances, illness, and eating behaviors collected at 2 years of age and again at 3.5-4.5 years of age.

Eating Habits
Data Dictionary https://cifasd.uits.iu.edu/downloads/eathabits/data_sharing/EatingHabit_DataDictionary.xls
Input Tool https://cifasd.uits.iu.edu/downloads/eathabits/data_sharing/EatingHabit.zip

These data dictionaries and Input Tools are made freely available at:
https://cifasd.uits.iu.edu/downloads/downloads.html

If you have any questions or would like more information, please contact us at: cifasdic@iu.edu

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