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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.

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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
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Child Information Sheet

child_info_sheet

01

Child Information Sheet as defined by Sally Rogers' lab at the University of California, Davis

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/project
interview_dateDateRequiredDate on which the interview/genetic test/sampling/imaging was completed. MM/DD/YYYYRequired fieldAddate
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.ADagemos
interview_chrono_ageIntegerRecommendedInterview Chronological Age0 :: 1200
interview_adj_ageIntegerRecommendedInterview Adjusted Age0 :: 1200
genderString20RequiredSex of the subjectM;FM = Male; F = FemaleSEX
comments_miscString4,000RecommendedMiscellaneous comments on study, interview, methodology relevant to this form data
respondentString20RecommendedRespondent
Mother;Father;Both; Child; Other; Parent
africanString5RecommendedEthnicity: African to American
Yes;No
asianString5RecommendedEthnicity: Asian
Yes;No
pacificString5RecommendedEthnicity: Pacific
Yes;No
caucasianString5RecommendedEthnicity: Caucasian
Yes;No
amindianString5RecommendedEthnicity: American Indian
Yes;No
indianString5RecommendedEthnicity: Indian
Yes;No
hispanicIntegerRecommendedIs subject of Hispanic, Latino, or Spanish origin?0; 10 = No; 1 = Yes
otherraceString50Recommendedspecify other race
multipleraceString5Recommendedmultiple ethnicity
Yes;No
primaryraceString50Recommendedprimary ethnic identification
liveswithString100Recommendedchild lives with
Both biological mother and father;Biological mother only;Biological father only;Biological mother and stepfather;Biological father and stepmother;Adoptive parents;Foster parents;Relatives;Other
liveswithotherString50Recommendedchild lives with other, specify
familystatusString100Recommendedfamily statusMarried;Separated;Divorced;Widow/widower;Divorced and remarried;Widow/widower and remarried;Living with a partner without marriage;Single
momeduString100Recommendedmother's educationless than 8th grade;some high school;high school diploma;some college;college degree;some graduate school;graduate school degree;other;missing;N/A
momeduoString50Recommendedmother's education, specify other
momoccuString100Recommendedmother's occupationunemployed; employed part-time; employed full-time; employed full-time and a second job; N/A; missing
momoccucString100Recommendedmother's current occupation
spseduString100Recommendedspouse's educationless than 8th grade;some high school;high school diploma;some college;college degree;some graduate school;graduate school degree;other;missing;N/A
spseduoString50Recommendedspouse's education, specify other
spsoccuString100Recommendedspouse's occupationunemployed; employed part-time; employed full-time; employed full-time and a second job; N/A; missing
spsoccucString50Recommendedspouse's current occupation
fmincomeString100Recommendedfamily incomeunder 10,000; under 25,000; between 10,000 and 25,000;25,000 to 49,999;50,000 to 74,999;75,000 to 99,999; above 100,000; 100,000 to 124,999;125,000 and above;not provided
refnewslString5RecommendedReferral source: newsletter
Yes;No
refwebString5RecommendedReferral source: website
Yes;No
refclinicString5RecommendedReferral source: clinic
Yes;No
refmdString5RecommendedReferral source: doctor
Yes;No
refmdnameString50RecommendedReferral source: doctor, specify name
refchargeString5RecommendedReferral source: CHARGE
Yes;No
refstudyString5RecommendedReferral source: another study
Yes;No
refstudynameString50RecommendedReferral source: another study, specify
refbrochString5RecommendedReferral source: brochure
Yes;No
refwordString5RecommendedReferral source: word of mouth
Yes;No
refcallString5RecommendedReferral source: a call from researchers
Yes;No
refotherString5RecommendedReferral source: other referral source
Yes;No
refothersString50RecommendedReferral source: specify
fhxbirdefectString5RequiredFamily medical History: Family Med Hx: birth defect
Yes;No;999
fhxcpString5RequiredCerebral Palsy
Yes;No; NK
NK = Not known
fhxkidneyString5RecommendedFamily medical History: kidney disease
Yes;No
fhxhandicapString5RecommendedFamily medical History: physical handicap
Yes;No
fhxsclerodermaString5RecommendedFamily medical History: scleroderma
Yes;No
fhxhuntingtonString5RecommendedFamily medical History: Huntington's chorea
Yes;No
fhxsickleString5RecommendedFamily medical History: sickle to cell anemia
Yes;No
fhxdmString5RequiredFamily medical History: diabetes
Yes;No;999
fhxallergyString5RequiredFamily medical History: other allergies
Yes;No;999
fhxasthmaString5RequiredFamily medical History: asthma
Yes;No;999
fhxamyotrophicString5RecommendedFamily medical History: amyotrophic lateral sclerosis
Yes;No
fhxhyperthyroidString5RecommendedFamily medical History: hyperthyrodism
Yes;No
fhxrheumatoidString5RecommendedFamily medical History: rheumatoid arthritis
Yes;No
fhxspondylitisString5RecommendedFamily medical History: ankylosing spondylitis
Yes;No
fhxtaysachsString5RecommendedFamily medical History: Tay to Sachs Disease
Yes;No
fhxheadinjuryString5RequiredFamily medical History: severe head injuryYes;No;999
fhxmigraineString5RecommendedFamily medical History: migraine headache
Yes;No
fhxlupusString5RequiredFamily medical History: lupus
Yes;No;999
fhxalzheimerString5RecommendedFamily medical History: Alzheimer's disease
Yes;No
fhxmusdysString5RecommendedFamily medical History: muscular dystrophyYes;No
fhxcancerString5RecommendedFamily medical History: cancer
Yes;No
fhxseasonalString5RequiredFamily medical History: seasonal allergy
Yes;No;999
fhxheartString5RequiredFamily medical History: heart disease
Yes;No;999
fhxceliacString5RequiredFamily medical History: Celiac disease
Yes;No;999
fhxhemolyticString5RecommendedFamily medical History: aplastic or hemolytic anemia
Yes;No
fhxaddisonString5RecommendedFamily medical History: Addison's diseaseYes;No
fhximmdisString5RecommendedFamily medical History: immune dysfunction/disorder
Yes;No
fhxraynaudString5RecommendedFamily medical History: Raynaud's syndrome
Yes;No
fhxcysticString5RecommendedFamily medical History: Cystic fibrosisYes;No
fhxhbpString5RecommendedFamily medical History: high blood pressure
Yes;No
fhxmsString5RecommendedFamily medical History: multiple sclerosis
Yes;No
fhxstrokeString5RecommendedFamily medical History: strokeYes;No
fhxhemophiliaString5RecommendedFamily medical History: hemophilia
Yes;No
fhxparkinsonString5RecommendedFamily medical History: Parkinson's disease
Yes;No
fhxseizureString5RequiredFamily medical History: seizure or epilepsyYes;No;999
fhxfoodString5RecommendedFamily medical History: food allergy
Yes;No
fhxmyastheniaString5RecommendedFamily medical History: Myasthenia Gravis
Yes;No
fhxcrohnString5RequiredFamily medical History: Crohn's DiseaseYes;No;999
fhxhypothyroidString5RecommendedFamily medical History: hypothyroidism
Yes;No
fhxguillainString5RecommendedFamily medical History: Guillain to barre syndrome
Yes;No
fhxsydenhamString5RecommendedFamily medical History: Sydenham's chorea
Yes;No
fhxotherString5RecommendedFamily medical History: other
Yes;No
fhxothersString255RecommendedFamily medical History: other, specify
fhxfamilyString150RecommendedFamily medical History: if yes, specify which family member, maternal/paternal, has each condition
momconcernString5Recommendeddo you have concerns about your child's development?
Yes;No
momconcernsString255Recommendedspecify concerns about your child's development
anyconcernString5Recommendeddoes anyone else have concerns about your child's development?Yes;No
anyconcernsString255Recommendedspecify else's concerns about your child's development
momcommentString255Recommendedspecify anything else about your child you would like us to know
referral_byIntegerRecommendedWho made your child's referral to the developmental clinic?1::41=Self-referral; 2=Pediatrician; 3=Recommendation by friend or family member; 4=Other
ref_otherString200RecommendedIf other, please specify:
why_referredIntegerRecommendedWhy was your child referred to the developmental clinic?1::51=Autism (ASD); 2=Speech/Communication delay; 3=Developmental Delay; 4=Motor delay concerns; 5=Other
referred_otherString200RecommendedIf other, please specify:
prior_da1IntegerRecommendedHas your child ever been referred for a developmental assessment before?1::31=Yes, but he/she did not complete the assessment; 2=Yes, an assessment was completed with normal results; 3=No, this is his/her first referral for a development assessment
other_apptsString200RecommendedWhat other appointments, if any, has your child had that are associated with the developmental assessment process? (For example, your child's pediatrician may have referred him/her to audiology, neurology, or other specialists for different types of assessments.)
da_difficultyIntegerRecommendedKnowing that the developmental assessment involves multiple appointments, and considering things that might affect your ability to complete this process such as transportation, time off of work, and childcare, on a scale of 0-10, how hard do you think it will be to complete the developmental assessment process on your own in the next 3 months?
da_confidenceIntegerRecommendedOn a scale of 0-10, how confident are you that you will be able to complete the developmental assessment process on your own in the next 3 months?
da_worriedIntegerRecommendedOn a scale of 0-10, how worried are you about how your child is developing?
worried_whyString200RecommendedExplain worried: Can you tell me why you answered a [insert number from previous answer]?ei_pt
da_importantIntegerRecommendedOn a scale of 0-10, how important is it for your child to complete the developmental assessment?
home_with_childIntegerRecommendedAre you home with your child full-time during the work week?0;10=No; 1=Yes
who_watches_childIntegerRecommendedIf no, who watches your child during the work week?1::41=In home care from family member or babysitter; 2=Out of home care from family member or babysitter; 3=Out of home care at childcare center; 4=Other
who_watches_child_otherString100RecommendedIf other, please specify:
childcare_how_oftenIntegerRecommendedDuring the work week, how frequently is your child cared for by someone other than yourself?0;10=Fulltime (>30 hours); 1=Part-time (<30 hours)
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: child_info_sheet01 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.