DATA SHARING

 
independently collected by project. Some participants have data in multiple projects. Please download this excel file for a more detailed list of projects, sample sizes, and available data for participants across project.

Phase 4 Projects

• GWAS – PLINK files are provided for GWAS data obtained on individuals with and without PAE, across phases 2-4
• WES – VCF files are provided for whole exome sequencing data on individuals with PAE
• Data extracted from health forms are available for children and adults who participated in an online study (DiGFASD). All participants had self-reported prenatal alcohol exposure. Most provided saliva and have GWAS and WES data available.

Data from physical exams are combined with data from parent questionnaires to estimate the likelihood of having an FASD using methods described in Mattson et al., 2023 (DOI: 10.1111/acer.14987).

Phase 1 – data include measures from the Leiter, NES3, DKEFS, CANTAB, CBC and other scales

Phase 2 – data include measures from the Leiter, DKEFS, CANTAB, BRIEF, ASEBA, Vineland, C-DISC, and other scales

Phase 3 – data include measures from the DAS-II, NEPSY-II, CANTAB, BRIEF, ASEBA, Vineland, C-DISC and other scales

Phase 1

[The => will link to detail when provided]

• General Intellectual Ability=>Leiter International Performance Scale-Revised (Leiter-R)
• Attention and Concentration=>NES3 – Continuous Performance Test (Animals)
• Executive Function=>Delis-Kaplan Executive Function System (Verbal Fluency, Trail Making); Progressive Planning Test; Visual Discrimination Reversal Learning
• Working Memory/Memory=>CANTAB (Spatial Working Memory; Spatial Span; Pattern Recognition Memory; Spatial Recognition Memory); Virtual Water Maze
• Visual-Motor=>Visual-Motor Integration Test
• Motor/Reaction Time: CANTAB (Motor Screening; Big/Little Circle); Grooved Pegboard Test
• Interhemispheric Transfer=> Finger Localization Test
• Psychological Symptomatology=> ASEBA (Child Behavior Checklist; Teacher Report Form; Youth Self Report); Disruptive Behavior Rating Scale; Sluggish Cognitive Tempo Scale; Pictorial Depression Scale

Phase 2

• General Intellectual Ability=>Wechsler Intelligence Scale for Children – Fourth Edition
• Executive Function=> Delis-Kaplan Executive Function System (Verbal Fluency, Trail Making; Color-Word Interference; Tower; 20 Questions; Design Fluency); CANTAB (Intra/Extradimensional Shift); BRIEF (Parent Version; Child Version)
• Working Memory/Memory=> CANTAB (Spatial Working Memory; Delayed Matching to Sample)
• Motor/Reaction Time=> CANTAB (Motor Screening; Big/Little Circle; Simple Reaction Time; Choice Reaction Time)
• Psychological Symptomatology=> ASEBA (Child Behavior Checklist; Teacher Report Form; Youth Self Report); Disruptive Behavior Rating Scale; Sluggish Cognitive Tempo Scale; Vineland Adaptive Behavior Scales, 2nd Edition (Parent/Caregiver Rating Form; Teacher Rating Form); C-DISC Psychiatric Interview (Demographics; GAD; MDD; ADHD; ODD; CD modules)

Phase 3

• General Intellectual Ability=> Differential Ability Scales – 2nd Ediction (DAS-II)
• Attention and Concentration=> NEPSY-II (Speeded Naming; Arrows)
• Executive Function=> CANTAB (Stockings of Cambridge); NEPSY-II (Word Generation; Inhibition); BRIEF (Parent Version)
• Working Memory/Memory=> California Verbal Learning Test – Children’s Version (CVLT-C); NEPSY-II (Memory for Names; Memory for Designs: Memory for Faces; Narrative Memory)
• Psychological Symptomatology=> ASEBA (Child Behavior Checklist; Teacher Report Form; Youth Self Report); Disruptive Behavior Rating Scale; Sluggish Cognitive Tempo Scale; Vineland Adaptive Behavior Scales, 2nd Edition (Parent/Caregiver Rating Form; Teacher Rating Form); C-DISC Psychiatric Interview (Demographics; GAD; MDD; ADHD; ODD; CD modules)

Phase 4

• Wechsler Intelligence Scale for Children – 5th Edition (WISC-V)
• Delis Kaplan Executive Function Scale (D-KEFS): Trail-making, Verbal Fluency, & Color Word Interference subtests
• NIH Toolbox: Picture Sequence Memory, Dimensional Card Sort, Flanker, List Sorting subtests
• Wechsler Individual Achievement Test – 3rd Edition (WIAT-III): Numerical operations, Word reading, Math problem solving subtests
• Vineland Adaptive Behavior Scales
• Behavior Assessment System for Children – 3rd Edition (BASC-3)
• Child Behavior Checklist (CBCL)
• Delis Rating of Executive Function (D-REF)

Data were collected from infants in Ukraine in a prospective study.

Phase 2

• Several variables are provided from an infant neurological exam and from the EEAC interview.

Phase 3

• Several variables from the Conners scale, EEAC and other neurobehavioral exams are provided. Cytokine data are available.

3D Facial Imaging data were collected in all phases of CIFASD

Phase 1

• Facial Data were acquired on an older Minolta laser system and include linear measurements for several anthropometric measures.

Phase 2

• Facial Data were acquired on a 3dMD system and include linear measurements as well as x, y, z coordinates for the measures.

Phase 3

• Facial Data were acquired on a 3dMD system and include linear measurements as well as x, y, z coordinates for the measures.

Phase 4

• Facial data were acquired on 3dMD and Canfield systems and include linear measurements as well as x, y, z coordinates for the measures.

 
Phases 2 & 3: volumetric data
Phase 4: volumetric data, surface area, cortical thickness

 
Data describing birth (weight, length, maternal substance use) are available for a very limited subset of individuals, as most participants were adopted.

 
Available data from Phase 1 were collected across five sites:
(1) Center for Behavioral Teratology, San Diego State University, San Diego, CA;
(2) Seven Northern Plains communities, including six Indian reservations;
(3) Institute of Psychiatry, Moscow, Russia;
(4) Moscow Region Institute of Obstetrics and Gynecology, Moscow, Russia, and
(5) Omni-Net sites at the Rivne Diagnostic Center, and the Kherson Children’s Hospital, Rivne and Kherson, Ukraine.

Subject recruitment varied between the sites, and subject population was racially and ethnically diverse.

Data for Neurobehavior, Dysmorphology Demographics, 3D Facial Imaging were collected from sites 1-3 for children between the ages of 5 -18 years, although the majority were 7-18 years old.

Data on current and recent maternal alcohol consumption, demographics and pregnancy history in a prospective study of prenatal alcohol exposure were collected from mothers and their babies from sites 4-5. Dysmorphology data was collected for all participants.

Phase 1 Projects

 
Available data from Phase 2 were collected across six sites:
(1) Center for Behavioral Teratology, San Diego State University, San Diego, CA;
(2) Emory University, Atlanta, GA;
(3) the University of California, Los Angeles, Los Angeles, CA;
(4) University of New Mexico, Albuquerque, NM;
(5) Seven Northern Plains communities, including six Indian reservations; and
(6) Omni-Net locations in Ukraine: the Rivne Diagnostic Center and the Khmelnytsky Perinatal Center in Rivne and Khmelnytsky, Ukraine.

Subject recruitment varied between the sites, and subject population was racially and ethnically diverse.

Data for Neurobehavior, Dysmorphology, Demographics and Brain Volume were collected from sites 1-5 for children between the ages of 8-16 years. 3D Facial Imaging and Genetic data are also available for children from sites 1-3. Data from a longitudinal study were collected from site 6 for 350 moderately to heavily alcohol-exposed pregnant women and approximately 350 low or unexposed women.

Pregnancies were followed with serial ultrasounds and maternal blood samples were collected and analyzed for various nutrients and markers of oxidative stress and inflammation. Live born infants were given a dysmorphology exam, facial imaging, and neurobehavioral testing.

Phase 2 Projects

 
Available data from Phase 3 were collected across five sites:
(1) San Diego State University,
(2) Emory University,
(3) University of California, Los Angeles and Children’s Hospital Los Angeles, CA,
(4) University of Minnesota; and
(5) Omni-Net locations in Ukraine: the Rivne Diagnostic Center and the Khmelnytsky Perinatal Center in Rivne and Khmelnytsky, Ukraine.

Subject recruitment varied between the sites, and subject population was racially and ethnically diverse.

Data for Neurobehavior, Dysmorphology, Demographics, 3D Facial Imaging, Genetics, and Brain Volume were collected from sites 1-4 for children ages 5-7 and 10-16 years under two age-based protocols. Data from maternal blood samples were collected from pregnant women and fetal data were collected via ultrasound from mothers and babies at site 5. Live born infants were given a dysmorphology exam, facial imaging, and neurobehavioral testing. Collection of blood, urine, and cheek cell samples were also included.

Phase 3 Projects

Available data dictionaries:
Phase 1: Phase 1 Data Dictionary (2003-2007)

Phase 2: Phase 2 Data Dictionary (2007-2012)

Phase 3: Phase 3 Data Dictionary (2012-2017)

 
Dysmorphology data were collected from all phases and some individuals have been examined longitudinally. These data include information on height, weight, head circumference and other physical measures, as well as philtrum score, thin vermillion border score, and palpebral figure length.