|
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 |
|
|
|
|
interview_date |
Date |
|
Required |
Date on which the interview/genetic test/sampling/imaging/biospecimen was completed. MM/DD/YYYY |
|
|
Addate |
|
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.
|
ADagemos |
Query
|
interview_chrono_age |
Integer |
|
Recommended |
Interview Chronological Age |
0 :: 1200
|
|
|
Query
|
interview_adj_age |
Integer |
|
Recommended |
Interview Adjusted Age |
0 :: 1200
|
|
|
|
sex |
String |
20
|
Required |
Sex of subject at birth |
M;F; O; NR
|
M = Male; F = Female; O=Other; NR = Not reported
|
SEX, gender |
|
comments_misc |
String |
4,000
|
Recommended |
Miscellaneous comments on study, interview, methodology relevant to this form data |
|
|
|
Query
|
respondent |
String |
20
|
Recommended |
Respondent |
|
|
|
Query
|
african |
String |
5
|
Recommended |
Ethnicity: African to American |
|
|
|
Query
|
asian |
String |
5
|
Recommended |
Ethnicity: Asian |
|
999= missing
|
|
Query
|
pacific |
String |
5
|
Recommended |
Ethnicity: Pacific |
|
999= missing
|
|
Query
|
caucasian |
String |
5
|
Recommended |
Ethnicity: Caucasian |
|
|
|
Query
|
amindian |
String |
5
|
Recommended |
Ethnicity: American Indian |
|
|
|
Query
|
indian |
String |
5
|
Recommended |
Ethnicity: Indian |
|
|
|
Query
|
hispanic |
Integer |
|
Recommended |
Is subject of Hispanic, Latino, or Spanish origin? |
0; 1; 999
|
0 = No; 1 = Yes; 999= missing
|
|
|
otherrace |
String |
100
|
Recommended |
specify other race |
|
The following questions are about you or the child's family.
|
|
Query
|
multiplerace |
String |
5
|
Recommended |
multiple ethnicity |
|
|
|
Query
|
primaryrace |
String |
50
|
Recommended |
primary ethnic identification |
|
|
|
Query
|
liveswith |
String |
100
|
Recommended |
child lives with |
|
|
|
Query
|
liveswithother |
String |
50
|
Recommended |
Child lives with other, specify |
|
|
|
Query
|
familystatus |
String |
100
|
Recommended |
family status |
Married;Separated;Divorced;Widow/widower;Divorced and remarried;Widow/widower and remarried;Living with a partner without marriage;Single
|
|
|
Query
|
momedu |
Integer |
|
Recommended |
mother's education |
1::12; 999
|
1=some elementary school; 2=completed elementary school; 3=some junior-high school; 4=completed junior-high school; 5=some high school; 6=high school diploma; 7=trade or vocational school; 8=some college; 9=college degree; 10=some graduate school; 11=graduate school degree;other; 999=missing/NA; 12=less than 8th grade
|
|
Query
|
momeduo |
String |
50
|
Recommended |
mother's education, specify other |
|
|
|
Query
|
momoccu |
String |
100
|
Recommended |
mother's occupation |
unemployed; employed part-time; employed full-time; employed full-time and a second job; N/A; missing
|
|
|
|
momoccuc |
String |
100
|
Recommended |
mother's current occupation |
|
|
|
Query
|
spsedu |
String |
100
|
Recommended |
spouse's education |
less than 8th grade;some high school;high school diploma;some college;college degree;some graduate school;graduate school degree;other;missing;N/A
|
|
|
Query
|
spseduo |
String |
50
|
Recommended |
spouse's education, specify other |
|
|
|
Query
|
spsoccu |
String |
100
|
Recommended |
spouse's occupation |
unemployed; employed part-time; employed full-time; employed full-time and a second job; N/A; missing
|
|
|
|
spsoccuc |
String |
50
|
Recommended |
spouse's current occupation |
|
|
|
Query
|
fmincome |
String |
100
|
Recommended |
family income |
under 10,000; under 25,000; between 10,000 and 25,000;25,000 to 49,999;50,000 to 74,999;75,000 to 99,999; above 100,000; 100,000 to 124,999;125,000 and above;not provided
|
|
|
Query
|
refnewsl |
String |
5
|
Recommended |
Referral source: newsletter |
|
|
|
Query
|
refweb |
String |
5
|
Recommended |
Referral source: website |
|
|
|
Query
|
refclinic |
String |
5
|
Recommended |
Referral source: clinic |
|
|
|
Query
|
refmd |
String |
5
|
Recommended |
Referral source: doctor |
|
|
|
Query
|
refmdname |
String |
50
|
Recommended |
Referral source: doctor, specify name |
|
|
|
Query
|
refcharge |
String |
5
|
Recommended |
Referral source: CHARGE |
|
|
|
Query
|
refstudy |
String |
5
|
Recommended |
Referral source: another study |
|
|
|
Query
|
refstudyname |
String |
50
|
Recommended |
Referral source: another study, specify |
|
|
|
Query
|
refbroch |
String |
5
|
Recommended |
Referral source: brochure |
|
|
|
Query
|
refword |
String |
5
|
Recommended |
Referral source: word of mouth |
|
|
|
Query
|
refcall |
String |
5
|
Recommended |
Referral source: a call from researchers |
|
|
|
Query
|
refother |
String |
1,000
|
Recommended |
Referral source: other referral source |
|
|
|
|
refothers |
String |
50
|
Recommended |
Referral source: specify |
|
|
|
Query
|
fhxbirdefect |
String |
5
|
Required |
Family medical History: Family Med Hx: birth defect |
|
999=NA/missing
|
|
Query
|
fhxcp |
String |
5
|
Required |
Cerebral Palsy |
|
NK = Not known
|
|
Query
|
fhxkidney |
String |
5
|
Recommended |
Family medical History: kidney disease |
|
|
|
Query
|
fhxhandicap |
String |
5
|
Recommended |
Family medical History: physical handicap |
|
|
|
Query
|
fhxscleroderma |
String |
5
|
Recommended |
Family medical History: scleroderma |
|
|
|
Query
|
fhxhuntington |
String |
5
|
Recommended |
Family medical History: Huntington's chorea |
|
|
|
Query
|
fhxsickle |
String |
5
|
Recommended |
Family medical History: sickle to cell anemia |
|
|
|
Query
|
fhxdm |
String |
5
|
Required |
Family medical History: diabetes |
|
999=NA/missing
|
|
Query
|
fhxallergy |
String |
5
|
Required |
Family medical History: other allergies |
|
999=NA/missing
|
|
Query
|
fhxasthma |
String |
5
|
Required |
Family medical History: asthma |
|
999=NA/missing
|
|
Query
|
fhxamyotrophic |
String |
5
|
Recommended |
Family medical History: amyotrophic lateral sclerosis |
|
|
|
Query
|
fhxhyperthyroid |
String |
5
|
Recommended |
Family medical History: hyperthyrodism |
|
|
|
Query
|
fhxrheumatoid |
String |
5
|
Recommended |
Family medical History: rheumatoid arthritis |
|
|
|
Query
|
fhxspondylitis |
String |
5
|
Recommended |
Family medical History: ankylosing spondylitis |
|
|
|
Query
|
fhxtaysachs |
String |
5
|
Recommended |
Family medical History: Tay to Sachs Disease |
|
|
|
Query
|
fhxheadinjury |
String |
5
|
Required |
Family medical History: severe head injury |
Yes;No;999
|
999=NA/missing
|
|
Query
|
fhxmigraine |
String |
5
|
Recommended |
Family medical History: migraine headache |
|
|
|
Query
|
fhxlupus |
String |
5
|
Required |
Family medical History: lupus |
|
999=NA/missing
|
|
Query
|
fhxalzheimer |
String |
5
|
Recommended |
Family medical History: Alzheimer's disease |
|
|
|
Query
|
fhxmusdys |
String |
5
|
Recommended |
Family medical History: muscular dystrophy |
Yes;No
|
|
|
Query
|
fhxcancer |
String |
5
|
Recommended |
Family medical History: cancer |
|
|
|
Query
|
fhxseasonal |
String |
5
|
Required |
Family medical History: seasonal allergy |
|
999=NA/missing
|
|
Query
|
fhxheart |
String |
5
|
Required |
Family medical History: heart disease |
|
999=NA/missing
|
|
Query
|
fhxceliac |
String |
5
|
Required |
Family medical History: Celiac disease |
|
999=NA/missing
|
|
Query
|
fhxhemolytic |
String |
5
|
Recommended |
Family medical History: aplastic or hemolytic anemia |
|
|
|
Query
|
fhxaddison |
String |
5
|
Recommended |
Family medical History: Addison's disease |
Yes;No
|
|
|
Query
|
fhximmdis |
String |
5
|
Recommended |
Family medical History: immune dysfunction/disorder |
|
|
|
Query
|
fhxraynaud |
String |
5
|
Recommended |
Family medical History: Raynaud's syndrome |
|
|
|
Query
|
fhxcystic |
String |
5
|
Recommended |
Family medical History: Cystic fibrosis |
Yes;No
|
|
|
Query
|
fhxhbp |
String |
5
|
Recommended |
Family medical History: high blood pressure |
|
|
|
Query
|
fhxms |
String |
5
|
Recommended |
Family medical History: multiple sclerosis |
|
|
|
Query
|
fhxstroke |
String |
5
|
Recommended |
Family medical History: stroke |
Yes;No
|
|
|
Query
|
fhxhemophilia |
String |
5
|
Recommended |
Family medical History: hemophilia |
|
|
|
Query
|
fhxparkinson |
String |
5
|
Recommended |
Family medical History: Parkinson's disease |
|
|
|
Query
|
fhxseizure |
String |
5
|
Required |
Family medical History: seizure or epilepsy |
Yes;No;999
|
999=NA/missing
|
|
Query
|
fhxfood |
String |
5
|
Recommended |
Family medical History: food allergy |
|
|
|
Query
|
fhxmyasthenia |
String |
5
|
Recommended |
Family medical History: Myasthenia Gravis |
|
|
|
Query
|
fhxcrohn |
String |
5
|
Required |
Family medical History: Crohn's Disease |
Yes;No;999
|
999=NA/missing
|
|
Query
|
fhxhypothyroid |
String |
5
|
Recommended |
Family medical History: hypothyroidism |
|
|
|
Query
|
fhxguillain |
String |
5
|
Recommended |
Family medical History: Guillain to barre syndrome |
|
|
|
Query
|
fhxsydenham |
String |
5
|
Recommended |
Family medical History: Sydenham's chorea |
|
|
|
Query
|
fhxother |
String |
5
|
Recommended |
Family medical History: other |
|
|
|
Query
|
fhxothers |
String |
255
|
Recommended |
Family medical History: other, specify |
|
|
|
|
fhxfamily |
String |
150
|
Recommended |
Family medical History: if yes, specify which family member, maternal/paternal, has each condition |
|
|
|
Query
|
momconcern |
String |
5
|
Recommended |
do you have concerns about your child's development? |
|
|
|
|
momconcerns |
String |
255
|
Recommended |
specify concerns about your child's development |
|
|
|
Query
|
anyconcern |
String |
5
|
Recommended |
does anyone else have concerns about your child's development? |
Yes;No
|
|
|
|
anyconcerns |
String |
255
|
Recommended |
specify else's concerns about your child's development |
|
|
|
Query
|
momcomment |
String |
255
|
Recommended |
specify anything else about your child you would like us to know |
|
|
|
Query
|
referral_by |
Integer |
|
Recommended |
Who made your child's referral to the developmental clinic? |
1::4
|
1=Self-referral; 2=Pediatrician; 3=Recommendation by friend or family member; 4=Other
|
|
Query
|
ref_other |
String |
200
|
Recommended |
If other, please specify: |
|
|
|
Query
|
why_referred |
Integer |
|
Recommended |
Why was your child referred to the developmental clinic? |
1::5
|
1=Autism (ASD); 2=Speech/Communication delay; 3=Developmental Delay; 4=Motor delay concerns; 5=Other
|
|
Query
|
referred_other |
String |
200
|
Recommended |
If other, please specify: |
|
|
|
Query
|
prior_da1 |
Integer |
|
Recommended |
Has your child ever been referred for a developmental assessment before? |
1::3
|
1=Yes, but he/she did not complete the assessment; 2=Yes, an assessment was completed with normal results; 3=No, this is his/her first referral for a development assessment
|
|
|
other_appts |
String |
200
|
Recommended |
What other appointments, if any, has your child had that are associated with the developmental assessment process? (For example, your child's pediatrician may have referred him/her to audiology, neurology, or other specialists for different types of assessments.) |
|
|
|
Query
|
da_difficulty |
Integer |
|
Recommended |
Knowing that the developmental assessment involves multiple appointments, and considering things that might affect your ability to complete this process such as transportation, time off of work, and childcare, on a scale of 0-10, how hard do you think it will be to complete the developmental assessment process on your own in the next 3 months? |
|
|
|
Query
|
da_confidence |
Integer |
|
Recommended |
On a scale of 0-10, how confident are you that you will be able to complete the developmental assessment process on your own in the next 3 months? |
|
|
|
Query
|
da_worried |
Integer |
|
Recommended |
On a scale of 0-10, how worried are you about how your child is developing? |
|
|
|
|
worried_why |
String |
200
|
Recommended |
Explain worried: Can you tell me why you answered a [insert number from previous answer]? |
|
|
ei_pt |
Query
|
da_important |
Integer |
|
Recommended |
On a scale of 0-10, how important is it for your child to complete the developmental assessment? |
|
|
|
Query
|
home_with_child |
Integer |
|
Recommended |
Are you home with your child full-time during the work week? |
0;1
|
0=No; 1=Yes
|
|
Query
|
who_watches_child |
Integer |
|
Recommended |
If no, who watches your child during the work week? |
1::4
|
1=In home care from family member or babysitter; 2=Out of home care from family member or babysitter; 3=Out of home care at childcare center; 4=Other
|
|
|
who_watches_child_other |
String |
100
|
Recommended |
If other, please specify: |
|
|
|
Query
|
childcare_how_often |
Integer |
|
Recommended |
During the work week, how frequently is your child cared for by someone other than yourself? |
0;1
|
0=Fulltime (>30 hours); 1=Part-time (<30 hours)
|
|