Data Collection Instrument Summary

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Data Collection Instrument Summary Table

Instrument
Time (min)
Respondent
Subject
Item#
Administration Mode(s) 
Instrument
Origin
Purpose
Screener







Social Communication Questionnaire (SCQ) 
10 
Caregiver1
Child
1- 2
Phone or Self-Administer
Standardized
To screen children for ASD. Captures information on child’s reciprocal social interaction, language, communication, reciprocal conversation, and repetitive and stereotyped patterns of behavior.
Self-Administered Questionnaires







Paternal Medical History
10
Father
Father
3
Self-Administer
CADDRE
To obtain information on medical and psychiatric conditions of father other than autoimmune disorders.
Maternal Medical History
10
Mother
Mother
3
Self-Administer
CADDRE 
To obtain information on medical and psychiatric conditions of mother other than autoimmune disorders.
Child Behavior Checklist (CBCL)
15
Caregiver1
Child
3
Self-Administer
Standardized
To assess behavior problems and social competencies of the child.

Carey Temperament Scale (Carey)
10
Caregiver1
Child
3
Self-Administer
Standardized
To assess child’s temperament.
Sleep Habits Questionnaire 
10
Caregiver1
Child
3
Self-Administer
Standardized
To assess child’s behaviors and medical disorders of sleep.
Stool & Diet Diary
60 (40 min Stool, 20 min Diet)
Caregiver1
Child
9
Self-Administer
CO:GI-Study
To assess child’s stool and corresponding dietary patterns.
Autoimmune Worksheet
20
Mother
 Nuclear family
3
Self-Administer
CADDRE
To obtain information on nuclear family’s autoimmune history.
Social Responsiveness Scale
45 min. (15 min per form)
Caregiver1

Nuclear Family
3
Self-Administer
Standardized
To obtain information on behaviors related to the nuclear family. 
GI Questionnaire
10 
Caregiver1
Child
3
Self administered
CADDRE 
To obtain information on GI disturbances in the child. 
Paternal Occupational Exposure Questionnaire
5
Father
Father
3
Self administered
CADDRE
To obtain information on paternal occupational exposure.
Clinical Intake Form
3
Caregiver1
Child
3
Self administered
CADDRE
To obtain information on child to assist with the clinical evaluation.
Caregiver Interview 
30*
Caregiver1
Mother & Child


5
Phone

CADDRE

To obtain etiologic information related to the mother’s medical & reproductive history & child’s postnatal medical experiences.
Vineland Adaptive Behavior Scales 
45
Caregiver1
Child2
7
Phone
Standardized
To assess child’s adaptive behavioral information (i.e., socialization, daily living skills) and language skills.
Early Development Questionnaire
20
Caregiver1
Child2
7
Self-administered
Ozonoff, Williams, Landa 
To assess regression of language skills, social skills, and functional behavior of child.
Services & Treatment
5 
Caregiver1
Child2 
7
Phone
CADDRE 
To assess the types and frequency of any services and treatments the child is currently receiving
Autism Diagnostic Interview-Rev (ADI-R)
120
Caregiver1
Child2
7
In-Person
home/clinic
Standardized
To assess whether a child has behaviors consistent with ASD based on social and communicative behaviors
Parent Clinical







 Biologic Samples
15 
Mother & Father
Mother & Father
8
In-Person
home/clinic
CADDRE use of Standard procedures
	
To study genetic components related to autism (including gene-environment interactions), and altered immune function and dysfunction (autoimmunity).
Child Clinical: Child Evaluation







Autism Diagnostic Observation Schedule (ADOS)
40
Child
Child2
7
In-Person home/clinic
Standardized
To assess whether a child has ASD based on observation of the child’s social interaction and communication skills and through the use of structured play activities. 
Mullen Scales of Early Learning
45
Child
Child
7
In-Person home/clinic
Standardized
To assess the child’s level of cognition in five domains: gross motor, visual reception, fine motor, receptive language, and expressive language.
Dysmorphology Exam
15
Child 
Child
7
In-Person home/clinic
CADDRE use of Standard procedures
To collect anthropometric measurements & any dysmorphic characteristics (i.e, digit ratios)
Biosampling
20
Child
Child
7
In-Person home/clinic
CADDRE use of Standard procedures
	
To examine genetic components (e.g. gene-environment interactions), immune function and dysfunction (autoimmunity), metabolism of xenobiotics, and hormone function possibly related to autism
Medical Record Abstraction







Maternal Primary Physician (PP) and Labor & Delivery (LD) Forms
N/A
N/A
Mother
10
Medical Record Abstraction
CADDRE/
CHARGE
To obtain information on maternal medical and reproductive history, as well as obstetric and delivery complications and events. 
Child Neonatal (N) and Pediatric (P) Forms
N/A
N/A
Child
10
Medical Record Abstraction
CADDRE/ CHARGE
To obtain neonatal and postnatal medical experiences of the child.
1A Caregiver is defined as a parent or relative of legal age who has resided with and been caring for the child since the child was 6 months of age or younger.
2Case– indicates these instruments will only be administered to CASE group.