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subjectkey |
GUID |
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Required |
The NDAR Global Unique Identifier (GUID) for research subject |
NDAR*
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src_subject_id |
String |
20
|
Required |
Subject ID how it's defined in lab/project |
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interview_date |
Date |
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Required |
Date on which the interview/genetic test/sampling/imaging/biospecimen was completed. MM/DD/YYYY |
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interview_age |
Integer |
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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.
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sex |
String |
20
|
Required |
Sex of subject at birth |
M;F; O; NR
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M = Male; F = Female; O=Other; NR = Not reported
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gender |
|
comments_misc |
String |
4,000
|
Recommended |
Miscellaneous comments on study, interview, methodology relevant to this form data |
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Query
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csq_q1 |
Integer |
|
Recommended |
When you first came to our program, were you seen as promptly as you felt necessary? |
1::4
|
1 = No, it seemed to take forever; 2 = No, there was some delay; 3 = Yes, promptly; 4 = Yes, very promptly
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Query
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csq_q2 |
Integer |
|
Recommended |
In general, how satisfied are you with the comfort and attractiveness of our facility? |
1::4
|
1 = Quite dissatisfied; 2 = Indifferent or mildly dissatisfied; 3 = Mostly satisfied; 4 = Very Satisfied
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Query
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csq_q3 |
Integer |
|
Recommended |
Did the characteristics of our building detract from the services you have received? |
1::4
|
1= Yes, they detracted very much; 2 = Yes, they detracted somewhat; 3 = No, they did not detract much; 4 = No, they did not detract at all
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Query
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psq5 |
Integer |
|
Recommended |
C: How satisfied are you with the amount of help you have received? P: How satisfied are you with the amount of help your child has received? |
1::4
|
1 = Quite dissatisfied; 2 = Indifferent or mildly dissatisfied; 3 = Mostly satisfied; 4 = Very satisfied
|
csq5a, csq5b, csq_q4 |
Query
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csq_q5 |
Integer |
|
Recommended |
Considering your particular needs, how appropriate are the services you have received? |
1::4
|
1 = Highly inappropriate; 2 = Generally inappropriate; 3 = Generally appropriate; 4 = Highly appropriate
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Query
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psq6 |
Integer |
|
Recommended |
C: Has the help you have received helped you to deal more effectively with your problems? P: Has the help your child received helped your child to deal more effectively with his her problems? |
1::4
|
1 = No, they seemed to make things worse; 2 = No, they really didn't help; 3 = Yes, they helped somewhat; 4 = Yes, they helped a great deal
|
csq6a, csq6b, csq_q6 |
Query
|
csq_q7 |
Integer |
|
Recommended |
When you talked to the person with whom you have worked most closely, how closely did he or she listen to you? |
1::4
|
1 = Not at all closely; 2 = Not too closely; 3 = Fairly closely; 4 = Very closely
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Query
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psq2 |
Integer |
|
Recommended |
C: Did you get the kind of help you wanted? P: Did you get the kind of help you wanted for your child? |
1::4
|
1 = No, definitely not; 2 = No, not really; 3 = Yes, generally; 4 = Yes, definitely;
|
csq2a, csq2b, csq_q8 |
Query
|
csq_q9 |
Integer |
|
Recommended |
Are there other services you need, but have not received? |
1::4
|
1 = Yes, there definitely were; 2 = Yes, I think there were; 3 = No, I don't think there were; 4 = No, there definitely were not
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Query
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csq_q10 |
Integer |
|
Recommended |
How clearly did the person with whom you worked most closely understand your problem and how you felt about it? |
1::4
|
1 = Very unclearly; 2 = Somewhat unclearly; 3 = Clearly; 4 = Very clearly
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Query
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csq_q11 |
Integer |
|
Recommended |
How competent and knowledgeable was the person with whom you have worked closely? |
1::4
|
1 = Poor abilities at best; 2 = Only of average ability; 3 = Competent and knowledgeable; 4 = Highly competent and knowledgeable
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Query
|
psq1 |
Integer |
|
Recommended |
C: How would you rate the quality of care you have received? P: How would you rate the quality of care your child has received? |
1::4
|
1 = Poor; 2 = Fair; 3 = Good; 4 = Excellent
|
csq1a, csq1b, csq_q12 |
Query
|
psq7 |
Integer |
|
Recommended |
C: In an overall, general sense, how satisfied are you with the help you have received? P: In an overall, general sense, how satisfied are you with the help your child has received? |
1::4
|
1 = Quite dissatisfied; 2 = Indifferent or mildly dissatisfied; 3 = Mostly satisfied; 4 = Very satisfied
|
csq7a, csq7b, csq_q13 |
Query
|
psq4 |
Integer |
|
Recommended |
C: If a friend were in need of similar help, would you recommend the program to him her? P: If a friend's child were in need of similar help, would you recommend the program to him her? |
1::4
|
1 = No, definitely not; 2 = No, not really; 3 = Yes, generally; 4 = Yes, definitely
|
csq4a, csq4b, csq_q14 |
Query
|
csq_q15 |
Integer |
|
Recommended |
Have the people in our program generally understood the kind of help you wanted? |
1::4
|
1 = No, they misunderstood almost completely; 2 = No, they seemed to misunderstand; 3 = Yes, they seemed to generally understand; 4 = Yes, they understood almost perfectly
|
|
Query
|
psq3 |
Integer |
|
Recommended |
C: To what extent has the program met your needs? P: To what extent has the program met your child's needs? |
1::4
|
1 = None of my (child's) needs have been met; 2 = Only a few of my (child's) needs have been met; 3 = Most of my (child's) needs have been met; 4 = Almost all of my (child's) needs have been met
|
csq3a, csq3b, csq_q16 |
Query
|
csq_q17 |
Integer |
|
Recommended |
Have your rights as an individual been respected? |
1::4
|
1 = No, almost never respected; 2 = No, sometimes not respected; 3 = Yes, generally respected; 4 = Yes, almost always respected
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Query
|
psq8 |
Integer |
|
Recommended |
C: If you were to seek help again, would you come back to our program? P: If you were to seek help again for your child, would you come back to our program? |
1::4
|
1 = No, definitely not; 2 = No, I don't think so; 3 = Yes, I think so; 4 = Yes, definitely
|
csq8a, csq8b, csq_q18 |
Query
|
csq_totalscore |
Integer |
|
Recommended |
Customer Satisfaction Questionnaire total score |
|
|
severity_totscore |
Query
|
visit |
String |
60
|
Recommended |
Visit name |
|
|
|
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csq9a |
Integer |
|
Recommended |
To what degree did the treatment program help you to better understand your disorder? |
1::4; -9
|
1=It was not at all helpful; 2=It was a little helpful; 3=It was quite helpful; 4=It was very helpful; -9=missing
|
csq9b |
|
csq10a |
Integer |
|
Recommended |
To what degree did the treatment program help you and your partner support each other through the experience? |
1::4; -9
|
1=It was not at all helpful; 2=It was a little helpful; 3=It was quite helpful; 4=It was very helpful; -9=missing
|
csq10b |
|
csq11a |
Integer |
|
Recommended |
How would you rate the extent to which your partner was included in the treatment program? |
1::3; -9
|
1=It was not enough; 2=It was just about right; 3=It was too much; -9=missing
|
csq11b |
|
csq12a |
Integer |
|
Recommended |
How would you rate the amount of treatment (i.e., number and length of sessions) you received in the program? Please rate based on your overall impression of the service. |
1::3; -9
|
1=It was not enough; 2=It was just about right; 3=It was too much; -9=missing
|
csq12b |
|
version_form |
String |
121
|
Recommended |
Form used/assessment name |
|
|
|
|
trtarm |
String |
200
|
Recommended |
Treatment arm |
|
|
treatment |
|
ptpr |
Integer |
|
Recommended |
Please indicate the status of the participant |
1;2
|
1=Patient; 2=Partner
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