|
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 |
|
|
randid, stepid |
|
interview_date |
Date |
|
Required |
Date on which the interview/genetic test/sampling/imaging/biospecimen was completed. MM/DD/YYYY |
|
|
|
|
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 |
Query
|
visit |
String |
60
|
Recommended |
Visit name |
|
|
|
Query
|
dayscons |
Integer |
|
Recommended |
days since consent |
|
|
|
Query
|
txmill |
Integer |
|
Recommended |
mental illness family problems |
0;1;-7
|
0=No; 1=Yes; -7=Refused
|
|
Query
|
txalcuse |
Integer |
|
Recommended |
treatment for alcohol use |
0;1;-7
|
0=No; 1=Yes; -7=Refused
|
|
Query
|
txdrugab |
Integer |
|
Recommended |
treatment for drug abuse |
0;1;-7
|
0=No; 1=Yes; -7=Refused
|
|
Query
|
txrtaway |
Integer |
|
Recommended |
see clinician right away |
0;1;-7
|
0=No; 1=Yes; -7=Refused
|
|
Query
|
txsoon |
Integer |
|
Recommended |
treatment as soon as wanted |
0::3;-7
|
0=Never; 1=Sometimes; 2=Usually; 3=Always; -7=Refused
|
|
Query
|
callappt |
Integer |
|
Recommended |
call to make appointment |
0;1;-7
|
0=No; 1=Yes; -7=Refused
|
|
Query
|
apptsoon |
Integer |
|
Recommended |
appointment for counseling |
0::3;-7
|
0=Never; 1=Sometimes; 2=Usually; 3=Always; -7=Refused
|
|
Query
|
hlpphone |
Integer |
|
Recommended |
help by telephone |
0;1;-7
|
0=No; 1=Yes; -7=Refused
|
|
Query
|
frqphone |
Integer |
|
Recommended |
advice by telephone |
0::3;-7
|
0=Never; 1=Sometimes; 2=Usually; 3=Always; -7=Refused
|
|
Query
|
ervisits |
Integer |
|
Recommended |
emergency room or center |
|
|
|
Query
|
txoffice |
Integer |
|
Recommended |
treatment for yourself |
0::3;-7
|
0=None; 1=1-5; 2=6-10; 3=more than 10; -7=Refused
|
|
Query
|
courtesy |
Integer |
|
Recommended |
office staff with courtesy |
0::3;-7
|
0=Never; 1=Sometimes; 2=Usually; 3=Always; -7=Refused
|
|
Query
|
waitgt15 |
Integer |
|
Recommended |
how often did wait in office |
0::3;-7
|
0=Never; 1=Sometimes; 2=Usually; 3=Always; -7=Refused
|
|
Query
|
hclisten |
Integer |
|
Recommended |
clinician listen carefully |
0::3;-7
|
0=Never; 1=Sometimes; 2=Usually; 3=Always; -7=Refused
|
|
Query
|
hcexpln |
Integer |
|
Recommended |
clinicians explain things |
0::3;-7
|
0=Never; 1=Sometimes; 2=Usually; 3=Always; -7=Refused
|
|
Query
|
hcrespct |
Integer |
|
Recommended |
clinicians show respect |
0::3;-7
|
0=Never; 1=Sometimes; 2=Usually; 3=Always; -7=Refused
|
|
Query
|
hctime |
Integer |
|
Recommended |
clinicians spend enough time |
0::3;-7
|
0=Never; 1=Sometimes; 2=Usually; 3=Always; -7=Refused
|
|
Query
|
txmeds |
Integer |
|
Recommended |
taken prescription medication |
0;1;-7
|
0=No; 1=Yes; -7=Refused
|
|
Query
|
medrisks |
Integer |
|
Recommended |
clinician tell you about risks |
0;1;-7
|
0=No; 1=Yes; -7=Refused
|
|
Query
|
hcsupprt |
Integer |
|
Recommended |
clinicians give you support |
0::3;-7
|
0=Never; 1=Sometimes; 2=Usually; 3=Always; -7=Refused
|
|
Query
|
txinvolv |
Integer |
|
Recommended |
how often were you involved |
0::3;-5;-7
|
0=Never; 1=Sometimes; 2=Usually; 3=Always; -5=No decisions; -7=Refused
|
|
Query
|
txhelped |
Integer |
|
Recommended |
helped by treatment |
0::3;-7
|
0=Not at all; 1=Somewhat; 2=Quite a bit; 3=A great deal; -7=Refused
|
|
Query
|
txkind |
Integer |
|
Recommended |
different kinds of treatments |
0;1;-7
|
0=No; 1=Yes; -7=Refused
|
|
Query
|
rtrefuse |
Integer |
|
Recommended |
right to refuse treatment |
0;1;-7
|
0=No; 1=Yes; -7=Refused
|
|
Query
|
rateall |
Integer |
|
Recommended |
rating of all clinicians |
0::10;-7
|
0=Worst treatment; 10=Best treatment; -7=Refused
|
|
Query
|
mainhc |
Integer |
|
Recommended |
main clinician |
0;1;-7
|
0=No; 1=Yes; -7=Refused
|
|
Query
|
ratemtx |
Integer |
|
Recommended |
who provides most treatment |
0::10;-7
|
0=Worst main clinician; 10=Best main clinician; -7=Refused
|
|
Query
|
nohealth |
Integer |
|
Recommended |
no health insurance |
0;1;-7
|
0=No; 1=Yes; -7=Refused
|
|
Query
|
planall |
Integer |
|
Recommended |
health plan for all |
0;1;-7
|
0=No; 1=Yes; -7=Refused
|
|
Query
|
inarow |
Integer |
|
Recommended |
covered by a health plan |
1::5;-7
|
1=Less than 12 months; 2=12-24 months; 3=2-5 years; 4=5-10 years; 5=10 or more years; -7=Refused
|
|
Query
|
paidtx |
Integer |
|
Recommended |
paid for by health plan |
0::2;-7
|
0=None; 1=All; 2=Only part; -7=Refused
|
|
Query
|
newhc |
Integer |
|
Recommended |
new clinician for treatment |
0;1;-7
|
0=No; 1=Yes; -7=Refused
|
|
Query
|
happyhc |
Integer |
|
Recommended |
happy with health plan |
0::2;-7
|
0=Not a problem; 1=A big problem; 2=A small problem; -7=Refused
|
|
Query
|
delaytx |
Integer |
|
Recommended |
delays in treatment |
0::2;-7
|
0=Not a problem; 1=A big problem; 2=A small problem; -7=Refused
|
|
Query
|
allowvst |
Integer |
|
Recommended |
return to your clinician |
0;1;-7
|
0=No; 1=Yes; -7=Refused
|
|
Query
|
paperwrk |
Integer |
|
Recommended |
paperwork for health plan |
0;1;-7
|
0=No; 1=Yes; -7=Refused
|
|
Query
|
pwrkprob |
Integer |
|
Recommended |
problem with paperwork |
0::2;-7
|
0=Not a problem; 1=A big problem; 2=A small problem; -7=Refused
|
|
Query
|
txprob |
Integer |
|
Recommended |
any problem in counseling |
0::2;-7
|
0=Not a problem; 1=A big problem; 2=A small problem; -7=Refused
|
|
Query
|
infowrtn |
Integer |
|
Recommended |
information written materials |
0;1;-7
|
0=No; 1=Yes; -7=Refused
|
|
Query
|
findinfo |
Integer |
|
Recommended |
find information |
0::2;-7
|
0=Not a problem; 1=A big problem; 2=A small problem; -7=Refused
|
|
Query
|
custserv |
Integer |
|
Recommended |
call customer service |
0;1;-7
|
0=No; 1=Yes; -7=Refused
|
|
Query
|
servhelp |
Integer |
|
Recommended |
problem to call service |
0::2;-7
|
0=Not a problem; 1=A big problem; 2=A small problem; -7=Refused
|
|
Query
|
rateplan |
Integer |
|
Recommended |
worst health plan possible |
0::10;-7
|
0=Worst plan; 10=Best plan; -7=Refused
|
|
Query
|
medmanag |
Integer |
|
Recommended |
medication management |
0;1;-7
|
0=No; 1=Yes; -7=Refused
|
|
Query
|
outpat |
Integer |
|
Recommended |
outpatient group therapy |
0;1;-7
|
0=No; 1=Yes; -7=Refused
|
|
Query
|
daytx |
Integer |
|
Recommended |
day treatment in hospital |
0;1;-7
|
0=No; 1=Yes; -7=Refused
|
|
Query
|
inpatpsy |
Integer |
|
Recommended |
mental health services |
0;1;-7
|
0=No; 1=Yes; -7=Refused
|
|
Query
|
grphome |
Integer |
|
Recommended |
residential group home |
0;1;-7
|
0=No; 1=Yes; -7=Refused
|
|
Query
|
ratemntl |
Integer |
|
Recommended |
rate overall mental health |
1::5;-7
|
1=Excellent; 2=Very good; 3=Good; 4=Fair; 5=Poor; -7=Refused
|
|
Query
|
ratehlth |
Integer |
|
Recommended |
rate overall health |
1::8;-7
|
1=Excellent; 2=Very good; 3=Good; 4=Fair; 5=Poor; -7=Refused; 7=Bad; 8=Very Bad; 6=Moderate
|
|
Query
|
site |
String |
101
|
Recommended |
Site |
|
Study Site
|
site_id, siteid |
Query
|
visits_feels |
Integer |
|
Recommended |
Feelings about the number of visits |
1::3;9
|
1 = They were just right; 2 = There were too many; 3 = There were not enough
|
visits |
Query
|
adi_feels |
Integer |
|
Recommended |
Feelings about the ADI |
1::3;9
|
1 = It seemed complete and well worth the time, I am glad it was done; 2 = It seemed too short and incomplete; 3 = It seemed too long and too detailed
|
adi |
Query
|
bldtst_feels |
Integer |
|
Recommended |
Feelings about the blood tests |
1::3;9
|
1 = They seemed to be a necessary part of the treatment to follow safety issues; 2 = There were not enough of them to ensure safety; 3 = I felt my chld could have been treated without risk without getting the blood
|
bldtst |
Query
|
behavior_feels |
Integer |
|
Recommended |
Feelings about behavioral assessments |
1::3;9
|
1 = They were very important; 2 = They were somewhat important; 3 = They were not important
|
behavior |
Query
|
sideeff_feels |
Integer |
|
Recommended |
Feelings about side effect assessments |
1::3;9
|
1 = They were very important; 2 = They were somewhat important; 3 = They were not important
|
sideeff |
Query
|
learng_feels |
Integer |
|
Recommended |
Feelings about learning assessments |
1::3;9
|
1 = They were very important; 2 = They were somewhat important; 3 = They were not important
|
learng |
Query
|
observe_feels |
Integer |
|
Recommended |
Feelings about playroom/observation |
1::3;9
|
1 = They were very important; 2 = They were somewhat important; 3 = They were not important
|
observe |
Query
|
recomm |
String |
500
|
Recommended |
Would you recommend this treatment to another parent of a child with an autism spectrum disorder/adolescent with an autism spectrum disorder?? |
|
|
recomd |
Query
|
doagain |
Integer |
|
Recommended |
If you had it to do all over again.... |
1::3;9
|
1 = Yes, definitely; 2 = Maybe; 3 = No
|
again |
Query
|
stdy_disliked |
Integer |
|
Recommended |
Aspects of study you did not like |
1;0;9
|
1 = Yes; 0 = No
|
disliked |
Query
|
stdy_liked |
Integer |
|
Recommended |
Aspects of study you did like |
1;0;9
|
1 = Yes; 0 = No
|
liked |
|
study |
String |
100
|
Recommended |
Study; The code for each individual study |
|
|
studyid |
Query
|
daysrz |
Integer |
|
Recommended |
days since randomization |
|
|
studyday |
Query
|
week |
Float |
|
Recommended |
Week in level/study |
|
99=week 10-week 14
|
interval |
Query
|
completed |
Integer |
|
Recommended |
Checks if completed |
0::3
|
0=No; 1=Yes; 2=Yes, lost; 3=Unverified
|
frmcomp |
Query
|
ci_enrolled |
Integer |
|
Recommended |
Participant enrolled |
0;1
|
0=No; 1=Yes
|
enrolled |
Query
|
psq_4 |
Integer |
|
Recommended |
While the blood was being drawn, we took some additional blood for purposes of research on important clinical issues. How do you feel about extra blood being taken for research purposes? |
1::3;999
|
1=Very glad it was done; 2=Did not mind; 3=Unnecessary
|
|
Query
|
psq_7 |
Integer |
|
Recommended |
Would you recommend this study to other parents who have children with similar
problems? |
1::3;999
|
1=Yes, definitely; 2=Maybe, some reservations; 3=No
|
|
Query
|
psq11 |
Integer |
|
Recommended |
Did you participate in the Behavior Management Training Program (in addition to medication management)? |
0;1;999
|
0=No, You have completed this questionnaire.
Do you have any other comments?; 1=Yes, Please Continue with Items 12-28
|
|
Query
|
psq12 |
Integer |
|
Recommended |
The number of training sessions/appointments was |
1::3;999
|
1=Too few; 2=Just right; 3=Too many
|
|
Query
|
psq13 |
Integer |
|
Recommended |
The length of training sessions/appointments was generally |
1::3;999
|
1=Too short; 2=Just right; 3=Too long
|
|
Query
|
psq14 |
Integer |
|
Recommended |
The materials presented by the clinician were generally |
1::3;999
|
1=Too easy; 2=Just right; 3=Too difficult
|
|
Query
|
psq15 |
Integer |
|
Recommended |
The videotape examples were generally |
1::3;999
|
1=Very helpful; 2=Somewhat helpful; 3=Not helpful
|
|
Query
|
psq16 |
Integer |
|
Recommended |
The handouts were generally |
1::3;999
|
1=Too easy; 2=Just right; 3=Too difficult
|
|
Query
|
psq17 |
Integer |
|
Recommended |
The session on behavioral principles was |
1::3;999
|
1=Very helpful; 2=Somewhat helpful; 3=Not helpful
|
|
Query
|
psq18 |
Integer |
|
Recommended |
The sessions on prevention approaches were |
1::3;999
|
1=Very helpful; 2=Somewhat helpful; 3=Not helpful
|
|
Query
|
psq19 |
Integer |
|
Recommended |
The sessions on teaching my child to listen or comply were |
1::3;999
|
1=Very helpful; 2=Somewhat helpful; 3=Not helpful
|
|
Query
|
psq20 |
Integer |
|
Recommended |
The sessions on how to reward my child and when to pay attention to my child were |
1::3;999
|
1=Very helpful; 2=Somewhat helpful; 3=Not helpful
|
|
Query
|
psq21 |
Integer |
|
Recommended |
The sessions on how to teach my child were |
1::3;999
|
1=Very helpful; 2=Somewhat helpful; 3=Not helpful
|
|
Query
|
psq22 |
Integer |
|
Recommended |
The sessions on how to maintain and generalize my child's behavior change to other settings were |
1::3;999
|
1=Very helpful; 2=Somewhat helpful; 3=Not helpful
|
|
Query
|
psq23 |
Integer |
|
Recommended |
The home visits were |
1::3;999
|
1=Very helpful; 2=Somewhat helpful; 3=Not helpful
|
|
Query
|
psq24 |
Integer |
|
Recommended |
The behaviors targeted for change in this intervention for my child |
1::3;999
|
1=Have improved; 2=Are about the same; 3=Have worsened
|
|
Query
|
psq25 |
Integer |
|
Recommended |
Present level of confidence: My level of confidence in managing present behaviors is |
1::3;999
|
1=I am more confident since participating in this intervention program; 2=I am about the same as when I started the program; 3=I am less confident than I had been
|
|
Query
|
psq26 |
Integer |
|
Recommended |
Level of confidence concerning new problem behaviors: In terms of managing future behavior issues, |
1::3;999
|
1=I am more confident since participating in this intervention program; 2=I am about the same as when I started the program; 3=I am less confident than I had been
|
|
Query
|
relationship |
Integer |
|
Recommended |
Relationship of respondent to individual |
1::94;-999
|
1 = Biological mom; 2 = Biological dad; 3 = Grandparent; 4 = Special education (sped) teacher; 5 = General education teacher; 6 = Occupational therapist; 7 = Speech and language therapist; 8 = Behavioral therapist; 9 = Paraprofessional; 10 = Aide; 11 = Principal; 12 = Administrator; 14 = Content teacher; 15 = Parent center director; 16 = Self; 17=Adoptive mother; 18=Adoptive father; 19=Foster mother; 20 = Foster father; 21=Grandmother; 22=Grandfather; 23=Step-mother; 24 = Step-father; 25=Aunt; 26=Uncle; 28=Both parents;31= Grandmother from mother side; 32= Grandfather from mother side; 33= Grandmother from father side; 34= Grandfather from father side; 36= Brother; 37= Sister; 38= Cousin; 39= female caregiver; 40=male caregiver; 41=Female child; 42=Male child; 43=Spouse/Mate; 44=Friend; 45=Parent; 46=Significant other; 47=Sibling; 48=Son/Daughter; 49=Son-in-law/Daughter-in law; 50=Other Relative; 51=Paid caregiver; 52=Friends; 53=Roommate; 54=Supervisor; 55=mother's boyfriend; 56=other parental figure; 57=Summary; 58=counselor ; 59 = other female relative; 60 = other male relative; 61 = non-relative ; 62=Maternal Aunt; 63=Maternal Uncle; 64=Maternal Cousin; 65 = Paternal Aunt; 66=Paternal Uncle; 67=Paternal Cousin ; 68=Biological/Adoptive Mother and Grandmother; 69=Biological/Adoptive Mother and Stepmother and Grandmother; 70=Biological/Adoptive Mother and Grandmother and Foster Father; 71=Biological/Adoptive Mother and Stepmother and Foster Mother; 72=Biological/Adoptive Mother and Foster Mother; 73=Biological/Adoptive Mother and Biological/Adoptive Father; 74=Biological/Adoptive Mother and Stepmother and Biological/Adoptive Father; 75=Biological/Adoptive Mother and Other; 76=Biological/Adoptive Mother and Stepmother and Stepfather; 77=Biological/Adoptive Mother and Stepfather; 78=Biological/Adoptive Mother and Grandfather; 79=Biological/Adoptive Mother and Stepmother and Foster Father; 80=Biological/Adoptive Mother and Stepmother; 81=Guardian, female; 82=Other female; 83=Guardian, male; 84=Other male; 85=Other/Grandparent/Nanny; 86 = Mother, Father, Guardian; 87 = Daughter, son, grandchild; 88 = Professional (e.g., social worker, nurse, therapist, psychiatrist, or group home staff); -999=Missing; 89 = Biological parent; 90=Other; 91 = Stepparent; 92 = Adoptive parent; 93 = Foster parent; 94 = Co-worker
|
|
Query
|
visnum |
Float |
|
Recommended |
Numeric Visit Number |
|
-1.5 = Pre-Screening; -1 = Screening; 0 = Baseline; ## = Visit ## (from 1 to 10); Whole numbers = standard monthly visits; #.001 - #.009 = Unscheduled; #.1 = End of Phase 1; #.2 = End of Phase 2; #.3 = End of Phase 3; #.4 = End of Open Choice Phase; #.5 = End of Study; #.6 = Genetic Analysis; 1000=all visits
|
|