|
subjectkey |
GUID |
|
Required |
The NDAR Global Unique Identifier (GUID) for research subject |
NDAR*
|
|
subject_key |
|
src_subject_id |
String |
20
|
Required |
Subject ID how it's defined in lab/project |
|
|
subejct_id |
|
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 |
|
version_form |
String |
121
|
Recommended |
Form used/assessment name |
|
|
|
Query
|
ipq_1 |
Integer |
|
Recommended |
How much does your/ your child's illness/developmental concerns affect your life? |
0 :: 10; 99
|
0=no affect at all; 10=severely affects my life; 99=Missing value
|
|
Query
|
ipq_2 |
Integer |
|
Recommended |
How long do you think your/your child's illness/developmental concerns will continue? |
0 :: 10; 99
|
0=no affect at all; 10=severely affects my life; 99=Missing value
|
|
Query
|
ipq_3 |
Integer |
|
Recommended |
How much control do you feel you have over your/your child illness/developmental concerns? |
0 :: 10; 99
|
0=no affect at all; 10=severely affects my life; 99=Missing value
|
|
Query
|
ipq_4 |
Integer |
|
Recommended |
How much do you think your/ your child's treatment can help your/his/her illness/developmental concerns? |
0 :: 10; 99
|
0=no affect at all; 10=severely affects my life; 99=Missing value
|
|
Query
|
ipq_5 |
Integer |
|
Recommended |
How much do you/your child experience symptoms from your/your child's illness/developmental concerns? |
0 :: 10; 99
|
0=no affect at all; 10=severely affects my life; 99=Missing value
|
|
Query
|
ipq_6 |
Integer |
|
Recommended |
How concerned are you about your/your child' illness? |
0 :: 10; 99
|
0=no affect at all; 10=severely affects my life; 99=Missing value
|
|
Query
|
ipq_7 |
Integer |
|
Recommended |
How well do you feel you understand your/ your child's illness/developmental concerns? |
0 :: 10; 99
|
0=no affect at all; 10=severely affects my life; 99=Missing value
|
|
Query
|
ipq_8 |
Integer |
|
Recommended |
How much does your/your child's aillness/developmental concerns affect you emotionally? (e.g. does it make you angry, scared, upset, or depressed?) |
0 :: 10; 99
|
0=no affect at all; 10=severely affects my life; 99=Missing value
|
|
Query
|
ipq_9 |
Integer |
|
Recommended |
Compared to one year ago, how prepared do you feel to manage your/your child's illness/developmental needs? |
0 :: 10; 99
|
0=no affect at all; 10=severely affects my life; 99=Missing value
|
|
Query
|
ipq_10 |
Integer |
|
Recommended |
How much do you share your/your child's illness/developmental diagnosis with other people such as friends and family members? |
0 :: 10; 99
|
0=no affect at all; 10=severely affects my life; 99=Missing value
|
|