Loading...

National Institute of Mental Health Data Archive (NDA) Sign In
NDA

Enter the email address associated with your existing NDA Account and click Continue Linking Process.

If you do not have an existing NDA account, click Go Back.

Warning Notice This is a U.S. Government computer system, which may be accessed and used only for authorized Government business by authorized personnel. Unauthorized access or use of this computer system may subject violators to criminal, civil, and/or administrative action. All information on this computer system may be intercepted, recorded, read, copied, and disclosed by and to authorized personnel for official purposes, including criminal investigations. Such information includes sensitive data encrypted to comply with confidentiality and privacy requirements. Access or use of this computer system by any person, whether authorized or unauthorized, constitutes consent to these terms. There is no right of privacy in this system.
National Institute of Mental Health Data Archive (NDA) Sign In
NDA

Success! An email is on its way!

Please check your email to complete the linking process. The link you receive is only valid for 30 minutes.

Check your spam or junk folder if you do not receive the email in the next few minutes.

Warning Notice This is a U.S. Government computer system, which may be accessed and used only for authorized Government business by authorized personnel. Unauthorized access or use of this computer system may subject violators to criminal, civil, and/or administrative action. All information on this computer system may be intercepted, recorded, read, copied, and disclosed by and to authorized personnel for official purposes, including criminal investigations. Such information includes sensitive data encrypted to comply with confidentiality and privacy requirements. Access or use of this computer system by any person, whether authorized or unauthorized, constitutes consent to these terms. There is no right of privacy in this system.
Create or Link an Existing NDA Account

Warning Notice

This is a U.S. Government computer system, which may be accessed and used only for authorized Government business by authorized personnel. Unauthorized access or use of this computer system may subject violators to criminal, civil, and/or administrative action. All information on this computer system may be intercepted, recorded, read, copied, and disclosed by and to authorized personnel for official purposes, including criminal investigations. Such information includes sensitive data encrypted to comply with confidentiality and privacy requirements. Access or use of this computer system by any person, whether authorized or unauthorized, constitutes consent to these terms. There is no right of privacy in this system.

NIMH Data Archive (NDA) Sign In or Create An Account
Update Password

You have logged in with a temporary password. Please update your password. Passwords must contain 8 or more characters and must contain at least 3 of the following types of characters:

  • Uppercase
  • Lowercase
  • Numbers
  • Special Characters limited to: %,_,!,@,#,$,-,%,&,+,=,),(,*,^,:,;
Update Password

Subscribe to our mailing list

Mailing List(s)
Email Format

You are now leaving the NIMH Data Archive (NDA) web site to go to:

Click on the address above if the page does not change within 10 seconds.

Disclaimer

NDA is not responsible for the content of this external site and does not monitor other web sites for accuracy.

Accept Terms
Data Access Terms - Decline Terms

Are you sure you want to cancel? This will decline terms and you will not be authorized for access.

NIMH Data Archive
NDA ABCD CCF OAI NIAAADA AMP SCZ HEAL

Burden Interview and Caregiver Demographics

416 Shared Subjects

N/A
Clinical Assessments
Questionnaire
05/28/2015
bicd01

View Change History
01
Definition
Submission Template
Query Element Name Data Type Size Required Description Value Range Notes Aliases
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 catieid
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 bicgage Integer Recommended Caregiver's Age
Query cg1_gender String 10 Recommended Caregiver/Parent 1's Gender Male;Female
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 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)
Query bicgyred Integer Recommended Years of caregiver education 0::16
Query 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
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
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
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
Data Structure

This page displays the data structure defined for the measure identified in the title and structure short name. The table below displays a list of data elements in this structure (also called variables) and the following information:

  • Element Name: This is the standard element name
  • Data Type: Which type of data this element is, e.g. String, Float, File location.
  • Size: If applicable, the character limit of this element
  • Required: This column displays whether the element is Required for valid submissions, Recommended for valid submissions, Conditional on other elements, or Optional
  • Description: A basic description
  • Value Range: Which values can appear validly in this element (case sensitive for strings)
  • Notes: Expanded description or notes on coding of values
  • Aliases: A list of currently supported Aliases (alternate element names)
  • For valid elements with shared data, on the far left is a Filter button you can use to view a summary of shared data for that element and apply a query filter to your Cart based on selected value ranges

At the top of this page you can also:

  • Use the search bar to filter the elements displayed. This will not filter on the Size of Required columns
  • Download a copy of this definition in CSV format
  • Download a blank CSV submission template prepopulated with the correct structure header rows ready to fill with subject records and upload

Please email the The NDA Help Desk with any questions.

Additional Information
Training Privacy Policy Disclaimer Contact Us
External Resources
Accessibility FOIA OIG HHS Vulnerability Disclosure
NIH Logo HHS Logo USA Gov Logo
c725efb98f608e6bc0136950f08b0c3af2bde994