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BIDD Demographics

1,423 Shared Subjects

Demographics Form for Behavioral Inflexibility in Intellectual and Developmental Disabilities (IDD) Project
Clinical Assessments
Demographics
01/15/2019
bidddemo01
01/17/2020
View Change History
01
Definition
Submission Template
Query Element Name Data Type Size Required Description Value Range Notes Aliases
subjectkey GUID Required The NDAR Global Unique Identifier (GUID) for research subject NDAR*
src_subject_id String 20 Required Subject ID how it's defined in lab/project pid, userid
interview_date Date Required Date on which the interview/genetic test/sampling/imaging/biospecimen was completed. MM/DD/YYYY date_of_form_completion, datecomp
interview_age Integer Required Age in months at the time of the interview/test/sampling/imaging. 0::1440 Age is rounded to chronological month. If the research participant is 15-days-old at time of interview, the appropriate value would be 0 months. If the participant is 16-days-old, the value would be 1 month.
sex String 20 Required Sex of subject at birth M;F; O; NR M = Male; F = Female; O=Other; NR = Not reported gender, tcgender
comments_misc String 4,000 Recommended Miscellaneous comments on study, interview, methodology relevant to this form data
respondent String 20 Recommended Respondent Mother;Father;Parent;Guardian;Teacher;Child;Self;Caregiver;Partner;Other informant
race String 30 Recommended Race of study subject
American Indian/Alaska Native; Asian; Hawaiian or Pacific Islander; Black or African American; White; More than one race; Unknown or not reported; Other Non-White; Other
child_race
otherrace String 100 Recommended specify other race The following questions are about you or the child's family.
ethnicity String 30 Recommended Ethnicity of participant
Hispanic or Latino; Not Hispanic or Latino; Unknown
child_hispanic
informant_gender String 5 Recommended Sex of the respondent M; F M = Male; F = Female caregiver_sex, pcgender
resp_race String 150 Recommended Respondent's race
American Indian/Alaska Native; Asian; Hawaiian or Pacific Islander; Black or African American; White; More than one race; Unknown or not reported
caregiver_race, informant_race, pcrace
fs_v1_q49a_resp_ethnicity String 30 Recommended Full Screener (Visit 1): Q49a respondent ethnicity (choices are Hispanic/Latino or Not Hispanic/Latino)
Hispanic or Latino;Not Hispanic or Latino;Not Provided
caregiver_hispanic, informant_ethnicity, pchispan
Query briefscreen_respondent_age_yrs Integer Recommended age of Respondent in years informant_age, pcage
Query mother_age Integer Recommended Mother's age 0 :: 1200 age_of_mother
Query father_age Integer Recommended Father's age 0 :: 1200 age_of_father
Query educational_placement Integer Recommended Type of educational placement
1::6;999
1= General Education; 2= Special Education; 3= General and Special Education; 4= Home Schooling; 5= None; 6= Other; 999=Missing tceduplace, type_of_educational_placement
child_school String 20 Recommended If child is currently in school, what grade is your child in? school_grade
Query informant_education_level Integer Recommended Highest education level of the respondent 1::6;999 1=Advanced graduate or professional degree; 2=College graduate; 3=Some college or post high school; 4=High school graduate; 5=Some high school; 6=Eighth grade or less pceduc
Query mother_education_level Integer Recommended Highest education level of mother 1::6;999 1=Advanced graduate or professional degree; 2=College graduate; 3=Some college or post high school; 4=High school graduate; 5=Some high school; 6=Eighth grade or less
Query father_education_level Integer Recommended Highest education level of father 1::6;999 1=Advanced graduate or professional degree; 2=College graduate; 3=Some college or post high school; 4=High school graduate; 5=Some high school; 6=Eighth grade or less
Query household_income Integer Recommended Household income 1 ::5; 999 1= >$90,000; 2=$60,001-$90,000; 3=$40,001-$60,000; 4=$20,000-$40,000; 5=Less than $20,000 hhincome
Query other_children_asd_diag Integer Recommended Parent has other children with ASD diagnosis
0::2
0= No; 1= Yes; 2= Not Applicable other_children_with_asd_diagnosis, pcothasdkids
Query autism_spectrum_disorder Integer Recommended Subject has autism spectrum disorder diagnosis
0;1
0= No; 1= Yes tcasd
Query verbal_ability Integer Recommended Subject level of verbal ability 1 :: 4; 999 1=My child has no meaningful words; 2=My child has at least 10 single words but does not often use 2-3 word phrases; 3=My child consistently uses 2-3 word phrases; 4=My child uses complete sentences most of the time; 999=Missing tcverbabil
Query iq_level Integer Recommended Subject IQ level 1 :: 4; 999 1=Below average IQ; 2=Average IQ; 3=Above average IQ; 4=Unknown; 999=Missing tciqlevel
Query diag_adhd Integer Recommended Subject diagnosed with Attention Deficit/Hyperactivity Disorder
0;1;999
0= No; 1= Yes; 999= Missing tcadhd
Query diag_opp_defiant Integer Recommended Subject diagnosed with Oppositional Defiant Disorder/Conduct Disorder
0;1;999
0= No; 1= Yes; 999= Missing tcoddcd
Query diag_anxiety Integer Recommended Subject diagnosed with Any Anxiety Disorder (separation anxiety, social phobia, generalized anxiety, etc)
0;1;999
0= No; 1= Yes; 999= Missing tcanxiety
Query diag_depression Integer Recommended Subject diagnosed with Depression
0;1;999
0= No; 1= Yes; 999= Missing tcdepress
Query diag_bipolar Integer Recommended Subject diagnosed with Bipolar Disorder/Manic Depression
0;1;999
0= No; 1= Yes; 999= Missing tcbipolar
Query diag_mental_ret Integer Recommended Subject diagnosed with Mental Retardation/Intellectual Disability
0;1;999
0= No; 1= Yes; 999= Missing tcmentalret
Query diag_none_of_the_above Integer Recommended Subject diagnosed with non of the above disorders
0;1;999
0= No; 1= Yes; 999= Missing tcdiagnone
diag_other_specify String 60 Recommended Subject diagnosed with Other specify diagoths
demo_resp_status Integer Recommended respondent's marital status 1::13 1 = Married; 2 = Remarried; 3 = Live with partner (not married); 4 = Separated; 5 = Divorced; 6 = Single (never married); 7 = Widowed; 8=Married or Living Together;9 = Missing/Not Applicable; 10 = Other; 11=Refused to answer; 12= Engaged; 13=Civil union resp_marital, rmarital
change_edu_placement Integer Recommended Change to educational placement 0;1 0= No; 1= Yes chgeduplc
medhx_abpain_other String 255 Recommended If diagnosed/suspected by other, specify:
health_probs_gi Integer Recommended Health problems - Gastrointestinal 0;1 0= No; 1= Yes hlthprobgi
health_probs_epi Integer Recommended Health problems - Epilepsy/Seizures 0;1 0= No; 1= Yes hlthprobes
health_probs_sleep Integer Recommended Health problems - Sleep disturbance 0;1 0= No; 1= Yes hlthprobsd
ph_14d String 100 Recommended Please describe your child's other health problem(s): Additional problems hlthprobss
change_health_probs Integer Recommended Change to health problems 0;1 0= No; 1= Yes chghealth
recent_injury_illness Integer Recommended Recent injury or illness 0;1 0= No; 1= Yes recentinj
injury_illness_describe String 200 Recommended Recent injury or illness -describe injlist
behavior_meds Integer Recommended Is your child taking any prescribed medication for issues related to behavior 0;1 0= No; 1= Yes takemeds
med_list String 200 Recommended List of prescribed medications for issues related to behavior medlist
change_meds Integer Recommended Change to behavioral medication 0;1 0= No; 1= Yes chgmeds
speech_therapy Integer Recommended Speech/language therapy outside of school 0;1 0= No; 1= Yes spchlang
speech_therapy_hours Float Recommended Speech/language therapy outside of school hours/month 0.5 :: 60 spchlanghrs
occup_therapy Integer Recommended Occupational therapy outside of school 0;1 0= No; 1= Yes occther
occup_therapy_hours Float Recommended Occupational therapy outside of school hours/month 0.5 :: 60 occtherhrs
physical_therapy Integer Recommended Physical therapy outside of school 0;1 0= No; 1= Yes physther
physical_therapy_hours Float Recommended Physical therapy outside of school hours/month 0.5 :: 60 phystherhrs
pdd_autism Integer Recommended Pervasive Developmental Disorder -Autism 0;1 0= No; 1= Yes autism
counseling Integer Recommended Counseling outside of school 0;1 0= No; 1= Yes counsel
counseling_hours Float Recommended Counseling outside of school hours/month 0.5 :: 60 counselhrs
social_skills_group Integer Recommended Social skills group outside of school 0;1 0= No; 1= Yes socskill
social_skills_group_hours Float Recommended Social skills group outside of school hours/month 0.5 :: 60 socskillhrs
vocational_rehab Integer Recommended Vocational rehabilitation outside of school 0;1 0= No; 1= Yes vocrehab
vocational_rehab_hours Float Recommended Vocational rehabilitation outside of school hours/month 0.5 :: 60 vocrehabhrs
other_services Integer Recommended Other services outside of school 0;1 0= No; 1= Yes othsrvc
asap10jd String 300 Recommended outside clinicians/services: Other - specify other_services_specify, othsrvcot
other_services_hours Float Recommended Other services outside of school hours/month 0.5 :: 60 othsrvchrs
pdd_asperger Integer Recommended Pervasive Developmental Disorder -Asperger 0;1 0= No; 1= Yes asperger
pdd_nos Integer Recommended Pervasive Developmental Disorder -Not Otherwise Specified 0;1 0= No; 1= Yes pddnos
pdd_autism_age Integer Recommended Pervasive Developmental Disorder -Autism diagnosis age autismage
pdd_asperger_age Integer Recommended Pervasive Developmental Disorder -Asperger diagnosis age aspergerage
pdd_nos_age Integer Recommended Pervasive Developmental Disorder -Not Otherwise Specified diagnosis age pddnosage
diag_other Integer Recommended Subject diagnosed with Other 0;1;999 0= No; 1= Yes; 999= Missing diagoth
pdd_life Integer Recommended Lifetime diagnosis of Pervasive Developmental Disorder 1;0 1 = present;0 = absent pdd_asd
hup2cyr Float Recommended Pervasive developmental disorder - age when noticed or diagnosed pdd_asd_age
diag_praderwilli_how Integer Recommended How subject diagnosed with Prader Willi Syndrome 1::3 1= As a newborn; 2= Before 3 years of age (but after newborn period); 3= After 3 years of age
w1_m_cu_healthpx Integer Recommended health at interview - has a history of other health problems 0;1; -888; -999 0 = No; 1 = Yes; -999 = missing; -888 = not applicable health_probs_other
health_probs_nota Integer Recommended Health problems - None of the above 0;1 0= No; 1= Yes
demo_pri_employment Integer Recommended Is the Primary Reporter employed? 0;1 0= No; 1= Yes informant_employed
child_fxs String 25 Recommended Has child been diagnosed with or experiencing symptoms of fragile x syndrome?
No; Experiencing Symptoms; Diagnosed
Parent report diag_fragilex
child_ds String 25 Recommended Has child been diagnosed with or experiencing symptoms of Down syndrome?
No; Experiencing Symptoms; Diagnosed
Parent report diag_down
medprob_genprader String 50 Recommended Child have Prader Willi Syndrome?
Yes;No;999
999=NA/missing diag_praderwilli
diag_down_how Integer Recommended How subject diagnosed with Down Syndrome 1::8 1= Prenatal screening test - Blood test in 1st trimester; 2= Prenatal screening test - Ultrasound in 1st trimester; 3= Prenatal screening test - Blood test in 2nd trimester; 4= Prenatal screening test - Combined test (blood test and ultrasound in 1st trimester and blood test in 2nd trimester; 5= Prenatal diagnostic test - Amniocentesis; 6= Prenatal diagnostic test - Chorionic villus sampling (CVS); 7= Prenatal diagnostic test - Percutaneous umbilical blood sampling (PUBS); 8= After birth
type_down Integer Recommended Type of Down Syndrome 1::4 1= Trisomy 21; 2= Mosaicism; 3= Translocation; 4= Unknown
diag_fragilex_how Integer Recommended How subject diagnosed with Fragile X Syndrome 1::4 1= Prenatal testing - Amniocentesis; 2= Prenatal testing - Chorionic Villus Sampling (CVS); 3= After birth - Before 24 months of age; 4= After birth - After 24 months of age
session Integer Recommended Session
Data Structure

This page displays the data structure defined for the measure identified in the title and structure short name. The table below displays a list of data elements in this structure (also called variables) and the following information:

  • Element Name: This is the standard element name
  • Data Type: Which type of data this element is, e.g. String, Float, File location.
  • Size: If applicable, the character limit of this element
  • Required: This column displays whether the element is Required for valid submissions, Recommended for valid submissions, Conditional on other elements, or Optional
  • Description: A basic description
  • Value Range: Which values can appear validly in this element (case sensitive for strings)
  • Notes: Expanded description or notes on coding of values
  • Aliases: A list of currently supported Aliases (alternate element names)
  • For valid elements with shared data, on the far left is a Filter button you can use to view a summary of shared data for that element and apply a query filter to your Cart based on selected value ranges

At the top of this page you can also:

  • Use the search bar to filter the elements displayed. This will not filter on the Size of Required columns
  • Download a copy of this definition in CSV format
  • Download a blank CSV submission template prepopulated with the correct structure header rows ready to fill with subject records and upload

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