|
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_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.
|
|
|
interview_date |
Date |
|
Required |
Date on which the interview/genetic test/sampling/imaging/biospecimen was completed. MM/DD/YYYY |
|
|
|
|
sex |
String |
20
|
Required |
Sex of subject at birth |
M;F; O; NR
|
M = Male; F = Female; O=Other; NR = Not reported
|
gender |
Query
|
pr_fam_empo1 |
Integer |
|
Recommended |
1. I feel that I have a right to approve all the services my son/daughter receives |
1::5;999
|
1 = Not True at all; 2 = Mostly Not True; 3 = Somewhat True; 4 = Mostly True; 5 = Very True; 999 = Missing
|
|
Query
|
pr_fam_empo2 |
Integer |
|
Recommended |
2. When problems arise with my son/daughter, I handle them pretty well |
1::5;999
|
1 = Not True at all; 2 = Mostly Not True; 3 = Somewhat True; 4 = Mostly True; 5 = Very True; 999 = Missing
|
|
Query
|
pr_fam_empo3 |
Integer |
|
Recommended |
3. I feel I have a part in improving services for adults/children in my community |
1::5;999
|
1 = Not True at all; 2 = Mostly Not True; 3 = Somewhat True; 4 = Mostly True; 5 = Very True; 999 = Missing
|
|
Query
|
pr_fam_empo4 |
Integer |
|
Recommended |
4. I feel confident in my ability to help my son/daughter grow and develop |
1::5;999
|
1 = Not True at all; 2 = Mostly Not True; 3 = Somewhat True; 4 = Mostly True; 5 = Very True; 999 = Missing
|
|
Query
|
pr_fam_empo5 |
Integer |
|
Recommended |
5. I know the steps to take when I am concerned my son/daughter is receiving poor service |
1::5;999
|
1 = Not True at all; 2 = Mostly Not True; 3 = Somewhat True; 4 = Mostly True; 5 = Very True; 999 = Missing
|
|
Query
|
pr_fam_empo6 |
Integer |
|
Recommended |
6. I make sure that professionals understand my opinions about what services my son/daughter needs |
1::5;999
|
1 = Not True at all; 2 = Mostly Not True; 3 = Somewhat True; 4 = Mostly True; 5 = Very True; 999 = Missing
|
|
Query
|
pr_fam_empo7 |
Integer |
|
Recommended |
7. I know what to do when problems arise with my son/daughter |
1::5;999
|
1 = Not True at all; 2 = Mostly Not True; 3 = Somewhat True; 4 = Mostly True; 5 = Very True; 999 = Missing
|
|
Query
|
pr_fam_empo8 |
Integer |
|
Recommended |
8. I get in touch with my legislators when important bills or issues concerning adults/children are pending |
1::5;999
|
1 = Not True at all; 2 = Mostly Not True; 3 = Somewhat True; 4 = Mostly True; 5 = Very True; 999 = Missing
|
|
Query
|
pr_fam_empo9 |
Integer |
|
Recommended |
9. I feel my family life is under control |
1::5;999
|
1 = Not True at all; 2 = Mostly Not True; 3 = Somewhat True; 4 = Mostly True; 5 = Very True; 999 = Missing
|
|
Query
|
pr_fam_empo10 |
Integer |
|
Recommended |
10. I understand how the service system for adults/children is organized |
1::5;999
|
1 = Not True at all; 2 = Mostly Not True; 3 = Somewhat True; 4 = Mostly True; 5 = Very True; 999 = Missing
|
|
Query
|
pr_fam_empo11 |
Integer |
|
Recommended |
11. I am able to make good decisions about what services my son/daughter needs |
1::5;999
|
1 = Not True at all; 2 = Mostly Not True; 3 = Somewhat True; 4 = Mostly True; 5 = Very True; 999 = Missing
|
|
Query
|
pr_fam_empo12 |
Integer |
|
Recommended |
12.I am able to work with agencies and professionals to decide what services my son/daughter needs |
1::5;999
|
1 = Not True at all; 2 = Mostly Not True; 3 = Somewhat True; 4 = Mostly True; 5 = Very True; 999 = Missing
|
|
Query
|
pr_fam_empo13 |
Integer |
|
Recommended |
13. I make sure I stay in regular contact with professionals/agencies who are providing services to my son/daughter |
1::5;999
|
1 = Not True at all; 2 = Mostly Not True; 3 = Somewhat True; 4 = Mostly True; 5 = Very True; 999 = Missing
|
|
Query
|
pr_fam_empo14 |
Integer |
|
Recommended |
14.I have ideas about the ideal service system for adults/children |
1::5;999
|
1 = Not True at all; 2 = Mostly Not True; 3 = Somewhat True; 4 = Mostly True; 5 = Very True; 999 = Missing
|
|
Query
|
pr_fam_empo15 |
Integer |
|
Recommended |
15. I help other families and adults get the services they need |
1::5;999
|
1 = Not True at all; 2 = Mostly Not True; 3 = Somewhat True; 4 = Mostly True; 5 = Very True; 999 = Missing
|
|
Query
|
pr_fam_empo16 |
Integer |
|
Recommended |
16. I am able to get the information to help me better understand my son/daughter |
1::5;999
|
1 = Not True at all; 2 = Mostly Not True; 3 = Somewhat True; 4 = Mostly True; 5 = Very True; 999 = Missing
|
|
Query
|
pr_fam_empo17 |
Integer |
|
Recommended |
17. I believe that other parents and I can have an influence on services for adults/children |
1::5;999
|
1 = Not True at all; 2 = Mostly Not True; 3 = Somewhat True; 4 = Mostly True; 5 = Very True; 999 = Missing
|
|
Query
|
pr_fam_empo18 |
Integer |
|
Recommended |
18. My opinion is just as important as professionals opinions in deciding what services my son/daughter needs |
1::5;999
|
1 = Not True at all; 2 = Mostly Not True; 3 = Somewhat True; 4 = Mostly True; 5 = Very True; 999 = Missing
|
|
Query
|
pr_fam_empo19 |
Integer |
|
Recommended |
19. I tell professionals what I think about services being provided to my son/daughter |
1::5;999
|
1 = Not True at all; 2 = Mostly Not True; 3 = Somewhat True; 4 = Mostly True; 5 = Very True; 999 = Missing
|
|
Query
|
pr_fam_empo20 |
Integer |
|
Recommended |
20. I tell people in agencies and government how services for adults/children can be improved |
1::5;999
|
1 = Not True at all; 2 = Mostly Not True; 3 = Somewhat True; 4 = Mostly True; 5 = Very True; 999 = Missing
|
|
Query
|
pr_fam_empo21 |
Integer |
|
Recommended |
21 .I believe I can solve problems with my son/daughter when they happen |
1::5;999
|
1 = Not True at all; 2 = Mostly Not True; 3 = Somewhat True; 4 = Mostly True; 5 = Very True; 999 = Missing
|
|
Query
|
pr_fam_empo22 |
Integer |
|
Recommended |
22. I know how to get agency administrators or legislators to listen to me |
1::5;999
|
1 = Not True at all; 2 = Mostly Not True; 3 = Somewhat True; 4 = Mostly True; 5 = Very True; 999 = Missing
|
|
Query
|
pr_fam_empo23 |
Integer |
|
Recommended |
23. I know what services my son/daughter needs |
1::5;999
|
1 = Not True at all; 2 = Mostly Not True; 3 = Somewhat True; 4 = Mostly True; 5 = Very True; 999 = Missing
|
|
Query
|
pr_fam_empo24 |
Integer |
|
Recommended |
24. I know what the rights of parents and children are under the laws. |
1::5;999
|
1 = Not True at all; 2 = Mostly Not True; 3 = Somewhat True; 4 = Mostly True; 5 = Very True; 999 = Missing
|
|
Query
|
pr_fam_empo25 |
Integer |
|
Recommended |
25. I feel that my knowledge and experiences as a parent can be used to improve services for adults/children and other families |
1::5;999
|
1 = Not True at all; 2 = Mostly Not True; 3 = Somewhat True; 4 = Mostly True; 5 = Very True; 999 = Missing
|
|
Query
|
pr_fam_empo26 |
Integer |
|
Recommended |
26. When I need help with problems in my family, I am able to ask for help from others |
1::5;999
|
1 = Not True at all; 2 = Mostly Not True; 3 = Somewhat True; 4 = Mostly True; 5 = Very True; 999 = Missing
|
|
Query
|
pr_fam_empo27 |
Integer |
|
Recommended |
27. I make efforts to learn new ways to help my son/daughter grow and develop |
1::5;999
|
1 = Not True at all; 2 = Mostly Not True; 3 = Somewhat True; 4 = Mostly True; 5 = Very True; 999 = Missing
|
|
Query
|
pr_fam_empo28 |
Integer |
|
Recommended |
28. When necessary, I take the initiative in looking for services for my child and family / for my son/daughter |
1::5;999
|
1 = Not True at all; 2 = Mostly Not True; 3 = Somewhat True; 4 = Mostly True; 5 = Very True; 999 = Missing
|
|
Query
|
pr_fam_empo29 |
Integer |
|
Recommended |
29. When dealing with my son/daughter, I focus on the good things as well as the problems |
1::5;999
|
1 = Not True at all; 2 = Mostly Not True; 3 = Somewhat True; 4 = Mostly True; 5 = Very True; 999 = Missing
|
|
Query
|
pr_fam_empo30 |
Integer |
|
Recommended |
30. I have a good understanding of the service system that my son/daughter is involved in |
1::5;999
|
1 = Not True at all; 2 = Mostly Not True; 3 = Somewhat True; 4 = Mostly True; 5 = Very True; 999 = Missing
|
|
Query
|
pr_fam_empo31 |
Integer |
|
Recommended |
31. When faced with problems involving my son/daughter, I decide what to do and then do it |
1::5;999
|
1 = Not True at all; 2 = Mostly Not True; 3 = Somewhat True; 4 = Mostly True; 5 = Very True; 999 = Missing
|
|
Query
|
pr_fam_empo32 |
Integer |
|
Recommended |
32. Professionals should ask me what services I want for my son/daughter |
1::5;999
|
1 = Not True at all; 2 = Mostly Not True; 3 = Somewhat True; 4 = Mostly True; 5 = Very True; 999 = Missing
|
|
Query
|
pr_fam_empo33 |
Integer |
|
Recommended |
33. I have a good understanding of my son/daughter's disorders |
1::5;999
|
1 = Not True at all; 2 = Mostly Not True; 3 = Somewhat True; 4 = Mostly True; 5 = Very True; 999 = Missing
|
|
Query
|
pr_fam_empo34 |
Integer |
|
Recommended |
34. I feel I am a good parent |
1::5;999
|
1 = Not True at all; 2 = Mostly Not True; 3 = Somewhat True; 4 = Mostly True; 5 = Very True; 999 = Missing
|
|
|
comments_misc |
String |
4,000
|
Recommended |
Miscellaneous comments on study, interview, methodology relevant to this form data |
|
|
pr_fam_empo35 |
|
timepoint_label |
String |
50
|
Recommended |
Timepoint/visit label |
|
|
|