|
subjectkey |
GUID |
|
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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catieid |
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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 |
|
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
|
M = Male; F = Female; O=Other; NR = Not reported
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gender |
Query
|
bicgage |
Integer |
|
Recommended |
Caregiver's Age |
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Query
|
cg1_gender |
String |
10
|
Recommended |
Caregiver/Parent 1's Gender |
Male;Female
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Query
|
relationship |
Integer |
|
Recommended |
Relationship of respondent to individual |
|
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
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Query
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bicgscho |
Integer |
|
Recommended |
How far did the caregiver go in school? |
1::10
|
1 = If the caregiver did not finish high school or obtain a GED, indicate years of education; 2 = Unknown; 3 = GED/high school diploma; 4 = Some college, did not graduate; 5 = Community college or technical school degree (e.g. AA); 6 = College graduate; 7 = College graduate and some Master's level courses; 8 = Master's degree completed 9 = Advanced degree courses, not graduateD (e.g. PhD, MD, DVM, DDS,JD); 10 = Advanced degree completed [e.g. PhD, MD, DVM, DDS, JD)
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Query
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bicgyred |
Integer |
|
Recommended |
Years of caregiver education |
0::16
|
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Query
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bi02 |
Integer |
|
Recommended |
Do you feel that the subject asks for more help than he/she needs? |
0::4
|
0 = Never; 1 = Rarely; 2 = Sometimes; 3 = Quite Frequently; 4 = Nearly Always
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|
Query
|
bi03 |
Integer |
|
Recommended |
Do you feel that because of the time you spend with the subject that you don't have enough time for yourself? |
0::4
|
0 = Never; 1 = Rarely; 2 = Sometimes; 3 = Quite Frequently; 4 = Nearly Always
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|
Query
|
bi04 |
Integer |
|
Recommended |
Do you feel stressed between caring for the subject and trying to meet other responsibilities for your family or work? |
0::4
|
0 = Never; 1 = Rarely; 2 = Sometimes; 3 = Quite Frequently; 4 = Nearly Always
|
|
Query
|
bi05 |
Integer |
|
Recommended |
Do you feel embarrassed over subject's behavior? |
0::4
|
0 = Never; 1 = Rarely; 2 = Sometimes; 3 = Quite Frequently; 4 = Nearly Always
|
|
Query
|
bi06 |
Integer |
|
Recommended |
Do you feel angry when you are around the subject? |
0::4
|
0 = Never; 1 = Rarely; 2 = Sometimes; 3 = Quite Frequently; 4 = Nearly Always
|
|
Query
|
bi07 |
Integer |
|
Recommended |
Do you feel that subject currently affects your relationahip with other family members or friends in a negative way? |
0::4
|
0 = Never; 1 = Rarely; 2 = Sometimes; 3 = Quite Frequently; 4 = Nearly Always
|
|
Query
|
bi08 |
Integer |
|
Recommended |
Are you afraid of what the future holds for the subject? |
0::4
|
0 = Never; 1 = Rarely; 2 = Sometimes; 3 = Quite Frequently; 4 = Nearly Always
|
|
Query
|
bi09 |
Integer |
|
Recommended |
Do you feel the subject is dependent upon you? |
0::4
|
0 = Never; 1 = Rarely; 2 = Sometimes; 3 = Quite Frequently; 4 = Nearly Always
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|
Query
|
bi10 |
Integer |
|
Recommended |
Do you feel strained when you are around the subject? |
0::4
|
0 = Never; 1 = Rarely; 2 = Sometimes; 3 = Quite Frequently; 4 = Nearly Always
|
|
Query
|
bi11 |
Integer |
|
Recommended |
Do you feel your health has suffered because of your involvement with the subject? |
0::4
|
0 = Never; 1 = Rarely; 2 = Sometimes; 3 = Quite Frequently; 4 = Nearly Always
|
|
Query
|
bi12 |
Integer |
|
Recommended |
Do you feel that you don't have as much privacy as you would like, because of the subject? |
0::4
|
0 = Never; 1 = Rarely; 2 = Sometimes; 3 = Quite Frequently; 4 = Nearly Always
|
|
Query
|
bi13 |
Integer |
|
Recommended |
Do you feel that your social life having friends over, because of the subject? |
0::4
|
0 = Never; 1 = Rarely; 2 = Sometimes; 3 = Quite Frequently; 4 = Nearly Always
|
|
Query
|
bi14 |
Integer |
|
Recommended |
Do you feel uncomfortable about having friends over, because of the subject? |
0::4
|
0 = Never; 1 = Rarely; 2 = Sometimes; 3 = Quite Frequently; 4 = Nearly Always
|
|
Query
|
bi15 |
Integer |
|
Recommended |
Do you feel that subject seems to expect you to take care of him/her, as if you were the only one he/she could depend on? |
0::4
|
0 = Never; 1 = Rarely; 2 = Sometimes; 3 = Quite Frequently; 4 = Nearly Always
|
|
Query
|
bi16 |
Integer |
|
Recommended |
Do you feel that you don't have enough money to care for the subject, in addition to the rest of your expenses? |
0::4
|
0 = Never; 1 = Rarely; 2 = Sometimes; 3 = Quite Frequently; 4 = Nearly Always
|
|
Query
|
bi17 |
Integer |
|
Recommended |
Do you feel that you will be unable to take care of the subject much longer? |
0::4
|
0 = Never; 1 = Rarely; 2 = Sometimes; 3 = Quite Frequently; 4 = Nearly Always
|
|
Query
|
bi18 |
Integer |
|
Recommended |
Do you feel you have lost control of your life since the subject's illness? |
0::4
|
0 = Never; 1 = Rarely; 2 = Sometimes; 3 = Quite Frequently; 4 = Nearly Always
|
|
Query
|
bi19 |
Integer |
|
Recommended |
Do you wish you could just leave thecare of the subject to someone else? |
0::4
|
0 = Never; 1 = Rarely; 2 = Sometimes; 3 = Quite Frequently; 4 = Nearly Always
|
|
Query
|
bi20 |
Integer |
|
Recommended |
Do you feel uncertain about what to do about the subject? |
0::4
|
0 = Never; 1 = Rarely; 2 = Sometimes; 3 = Quite Frequently; 4 = Nearly Always
|
|
Query
|
bi21 |
Integer |
|
Recommended |
Do you feel you should be doing more for the subject? |
0::4
|
0 = Never; 1 = Rarely; 2 = Sometimes; 3 = Quite Frequently; 4 = Nearly Always
|
|
Query
|
bi22 |
Integer |
|
Recommended |
Do you feel you could do a better job in caring for the subject? |
0::4
|
0 = Never; 1 = Rarely; 2 = Sometimes; 3 = Quite Frequently; 4 = Nearly Always
|
|
Query
|
bi23 |
Integer |
|
Recommended |
Overall, how burdened do you feel in caring for the subject? |
0::4
|
0 = Not at all; 1 = A Little; 2 = Moderately; 3 = Quite a bit; 4 = Extremely
|
|
Query
|
visit |
String |
60
|
Recommended |
Visit name |
|
|
|
Query
|
visitid |
Integer |
|
Recommended |
MetaTrial Visit ID |
|
System variable: unique code for each type of visit -use to merge files
|
|
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
|
|
Query
|
phase_ct |
String |
20
|
Recommended |
Current Phase. Phase patient was in at the time of the assessment Phase 4 refers to the follow-up phase. |
Pre-Rand; Phase 1/1A; Phase 2; Phase 3; Phase 4; Phase 1B; Open-Choice Phase; Screening; Phase 1
|
|
phase |
Query
|
burdn_ts |
Integer |
|
Recommended |
BURDEN Total Score |
|
Created variable with 20% missing data rule applied: Sum of (BI02 - BI23)
|
|
Query
|
last1 |
Integer |
|
Recommended |
Flag Last Phase 1/1A Visit |
|
1=Yes for all records meeting this criteria
|
|
Query
|
base1 |
Integer |
|
Recommended |
Flag Baseline Phase 1/1A Visit |
|
1=Yes for all records meeting this criteria
|
|
Query
|
base_ts |
Float |
|
Recommended |
Baseline Total Score |
|
Scare at Phase 1 baselline
|
|
Query
|
c_ts |
Float |
|
Recommended |
Changed from Baseline ADAS Total Score |
|
Change from Phase 1 baseline
|
|