Loading...

Login
Reset Password

NDAR provides a single access to de-identified autism research data. For permission to download data, you will need an NDAR account with approved access to NDAR or a connected repository (AGRE, IAN, or the ATP). For NDAR access, you need to be a research investigator sponsored by an NIH recognized institution with federal wide assurance. See Request Access for more information.

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.

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:

Subscribe to our mailing list

Mailing List(s)
Email Format

You are now leaving the National Database for Autism Research (NDAR) web site to go to:

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

Disclaimer

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

Selected Filters
No filters selected

The filters you have selected from various query interfaces will be stored here, in the 'Filter Cart'. The database will be queried using filters added to your 'Filter Cart', when multiple filters are defined, each will be executed using 'AND' logic, so with each filter that is applied the result set gets smaller.

From the 'Filter Cart' you can inspect each of the filters that have been defined, and you also have the option to remove filters. The 'Filter Cart' itself will display the number of filters applied along with the number of subjects that are identified by the combination of those filters. For example a GUID filter with two subjects, followed by a GUID filter for just one of those subjects would return only data for the subject that is in both GUID filters.

If you have a question about the filter cart, or underlying filters please contact the help desk at The NDA Help Desk

Description
Value Range
Notes
Data Structures with shared data
No filters have been selected
Switch User

Burden Interview and Caregiver Demographics

bicd

01

Download Definition as
Download Submission Template as
Element NameData TypeSizeRequiredDescriptionValue RangeNotesAliases
subjectkeyGUIDRequiredThe NDAR Global Unique Identifier (GUID) for research subjectNDAR*
src_subject_idString20RequiredSubject ID how it's defined in lab/projectcatieid
interview_dateDateRequiredDate on which the interview/genetic test/sampling/imaging was completed. MM/DD/YYYYRequired field
interview_ageIntegerRequiredAge in months at the time of the interview/test/sampling/imaging.0 :: 1260Age 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.
genderString20RequiredSex of the subjectM;FM = Male; F = Female
bicgageIntegerRecommendedCaregiver's Age
cg1_genderString10RecommendedCaregiver/Parent 1's GenderMale;Female
relationshipIntegerRecommendedRelationship of respondent to individual
1::84; -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; 13 = Other; 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; 27=Missing Data; 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; 90= Other, specify; -999= Missing; 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
bicgschoIntegerRecommendedHow far did the caregiver go in school?1::101 = 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)
bicgyredIntegerRecommendedYears of caregiver education0::16
bi02IntegerRecommendedDo you feel that the subject asks for more help than he/she needs?0::40 = Never; 1 = Rarely; 2 = Sometimes; 3 = Quite Frequently; 4 = Nearly Always
bi03IntegerRecommendedDo you feel that because of the time you spend with the subject that you don't have enough time for yourself?0::40 = Never; 1 = Rarely; 2 = Sometimes; 3 = Quite Frequently; 4 = Nearly Always
bi04IntegerRecommendedDo you feel stressed between caring for the subject and trying to meet other responsibilities for your family or work?0::40 = Never; 1 = Rarely; 2 = Sometimes; 3 = Quite Frequently; 4 = Nearly Always
bi05IntegerRecommendedDo you feel embarrassed over subject's behavior?0::40 = Never; 1 = Rarely; 2 = Sometimes; 3 = Quite Frequently; 4 = Nearly Always
bi06IntegerRecommendedDo you feel angry when you are around the subject?0::40 = Never; 1 = Rarely; 2 = Sometimes; 3 = Quite Frequently; 4 = Nearly Always
bi07IntegerRecommendedDo you feel that subject currently affects your relationahip with other family members or friends in a negative way?0::40 = Never; 1 = Rarely; 2 = Sometimes; 3 = Quite Frequently; 4 = Nearly Always
bi08IntegerRecommendedAre you afraid of what the future holds for the subject?0::40 = Never; 1 = Rarely; 2 = Sometimes; 3 = Quite Frequently; 4 = Nearly Always
bi09IntegerRecommendedDo you feel the subject is dependent upon you?0::40 = Never; 1 = Rarely; 2 = Sometimes; 3 = Quite Frequently; 4 = Nearly Always
bi10IntegerRecommendedDo you feel strained when you are around the subject?0::40 = Never; 1 = Rarely; 2 = Sometimes; 3 = Quite Frequently; 4 = Nearly Always
bi11IntegerRecommendedDo you feel your health has suffered because of your involvement with the subject?0::40 = Never; 1 = Rarely; 2 = Sometimes; 3 = Quite Frequently; 4 = Nearly Always
bi12IntegerRecommendedDo you feel that you don't have as much privacy as you would like, because of the subject?0::40 = Never; 1 = Rarely; 2 = Sometimes; 3 = Quite Frequently; 4 = Nearly Always
bi13IntegerRecommendedDo you feel that your social life having friends over, because of the subject?0::40 = Never; 1 = Rarely; 2 = Sometimes; 3 = Quite Frequently; 4 = Nearly Always
bi14IntegerRecommendedDo you feel uncomfortable about having friends over, because of the subject?0::40 = Never; 1 = Rarely; 2 = Sometimes; 3 = Quite Frequently; 4 = Nearly Always
bi15IntegerRecommendedDo 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::40 = Never; 1 = Rarely; 2 = Sometimes; 3 = Quite Frequently; 4 = Nearly Always
bi16IntegerRecommendedDo you feel that you don't have enough money to care for the subject, in addition to the rest of your expenses?0::40 = Never; 1 = Rarely; 2 = Sometimes; 3 = Quite Frequently; 4 = Nearly Always
bi17IntegerRecommendedDo you feel that you will be unable to take care of the subject much longer?0::40 = Never; 1 = Rarely; 2 = Sometimes; 3 = Quite Frequently; 4 = Nearly Always
bi18IntegerRecommendedDo you feel you have lost control of your life since the subject's illness?0::40 = Never; 1 = Rarely; 2 = Sometimes; 3 = Quite Frequently; 4 = Nearly Always
bi19IntegerRecommendedDo you wish you could just leave thecare of the subject to someone else?0::40 = Never; 1 = Rarely; 2 = Sometimes; 3 = Quite Frequently; 4 = Nearly Always
bi20IntegerRecommendedDo you feel uncertain about what to do about the subject?0::40 = Never; 1 = Rarely; 2 = Sometimes; 3 = Quite Frequently; 4 = Nearly Always
bi21IntegerRecommendedDo you feel you should be doing more for the subject?0::40 = Never; 1 = Rarely; 2 = Sometimes; 3 = Quite Frequently; 4 = Nearly Always
bi22IntegerRecommendedDo you feel you could do a better job in caring for the subject?0::40 = Never; 1 = Rarely; 2 = Sometimes; 3 = Quite Frequently; 4 = Nearly Always
bi23IntegerRecommendedOverall, how burdened do you feel in caring for the subject?0::40 = Not at all; 1 = A Little; 2 = Moderately; 3 = Quite a bit; 4 = Extremely
visitString50RecommendedVisit nameCharacter description of each type of visit
visitidIntegerRecommendedMetaTrial Visit IDSystem variable: unique code for each type of visit -use to merge files
visnumFloatRecommendedNumeric 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
phase_ctString20RecommendedCurrent 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 1phase
burdn_tsIntegerRecommendedBURDEN Total ScoreCreated variable with 20% missing data rule applied: Sum of (BI02 - BI23)
last1IntegerRecommendedFlag Last Phase 1/1A Visit1=Yes for all records meeting this criteria
base1IntegerRecommendedFlag Baseline Phase 1/1A Visit1=Yes for all records meeting this criteria
base_tsFloatRecommendedBaseline Total ScoreScare at Phase 1 baselline
c_tsFloatRecommendedChanged from Baseline ADAS Total ScoreChange 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.

Distribution for DataStructure: bicd01 and Element:
Chart Help

Filters enable researchers to view the data shared in NDA before applying for access or for selecting specific data for download or NDA Study assignment. For those with access to NDA shared data, you may select specific values to be included by selecting an individual bar chart item or by selecting a range of values (e.g. interview_age) using the "Add Range" button. Note that not all elements have appropriately distinct values like comments and subjectkey and are not available for filtering. Additionally, item level detail is not always provided by the research community as indicated by the number of null values given.

Filters for multiple data elements within a structure are supported. Selections across multiple data structures will be supported in a future version of NDA.