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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.

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Description
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Data Structures with shared data
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FXS Demographics

fxs_demographics

04

Demographic information as defined by Dr. Hessl's group from the Fragile X Project, MIND Institute, University of California, Davis

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Element NameData TypeSizeRequiredDescriptionValue RangeNotesAliases
subjectkeyGUIDRequiredThe NDAR Global Unique Identifier (GUID) for research subjectNDAR*
src_subject_idString20RequiredSubject ID how it's defined in lab/projectsubject_code
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.age
interview_dateDateRequiredDate on which the interview/genetic test/sampling/imaging was completed. MM/DD/YYYYRequired field
genderString20RequiredSex of the subjectM;FM = Male; F = Female
fmr1_statusString20RequiredFMR1 DNA groupFull Mutation; Mosaicism; Premutation Carrier; Unknown; Normal RangeFragile X Full Mutation=Individual has >200 CGG repeats in FMR1 gene. Status confirmed by blood test. This causes the FMR1 gene to shut down production of FMRP. The lack of FMRP causes fragile x syndrome; Fragile X Mosaicism; Fragile X Premutation Carrier= Individual has 55-200 CGG repeats in FMR1 gene. Status confirmed by blood test. He/She carries an unstable mutation of the gene that can expand in future generations; Unknown= Individual at risk for FMR1 mutation; Mutation status unknown; Normal Range=Individual has < 45 CGG repeats in FMR1 gene, which falls into the normal range. Status confirmed by blood test. Individual is related to someone with CGG repeat length >55 in FMR1 gene.genetic_mutation_status
phenotypeString200RecommendedPhenotype/diagnosis for the subjectstatus_group
family_user_def_idString20RecommendedFamily Pedigree User-Defined ID
diag_groupString5RequiredEnrollment diagnostic group of subjectFX;CX;TD; TX; UXFX=Individual has >200 CGG repeats in FMR1 gene. Status confirmed by blood test. This causes the FMR1 gene to shut down production of FMRP. The lack of FMRP causes fragile x syndrome.CX=Individual has 55-200 CGG repeats in FMR1 gene. Status confirmed by blood test. He/She carries an unstable mutation of the gene that can expand in future generations.UX=Individual at risk for FMR1 mutation; Mutation status unknown.TX=Individual has < 45 CGG repeats in FMR1 gene, which falls into the normal range. Status confirmed by blood test. Individual is related to someone with CGG repeat length >55 in FMR1 gene
family_diag_groupString5RequiredEnrollment diagnostic group of familyFX = Fragile X Syndrome
raceString30RecommendedRace of study subjectAmerican Indian/Alaska Native; Asian; Hawaiian or Pacific Islander; Black or African American; White; More than one race; Unknown or not reported
ethnicityString30RecommendedEthnicity of participant
Hispanic or Latino; Not Hispanic or Latino; Unknown
hh_incomeIntegerRecommendedHousehold income range of adult subject1::6; 91 = Less than $20,000; 2 = $20,000 to $39,999; 3 = $40,000 to $59,999; 4 = $60,000 to $79,999; 5 = $80,000 to $99,999; 6 = $100,000 or more; 9 = Unknown
education_levelIntegerRecommendedHighest level of education completed for adult subject1::6; 91 = Grades 1 to 11; 2 = High school graduate or GED; 3 = Associate or technical degree; 4 = Bachelor's degree; 5 = Master's degree; 6 = Doctorate or equivalent professional degree; 9 = Unknown
marital_statusIntegerRecommendedMarital status of adult subject1::5;91 = Married; 2 = Divorced; 3 = Single or never married; 4 = Widow or widower; 5=Remarried; 9 = Unknown
iqIntegerRecommendedIQ score as defined by the completion of an appropriate assessementfsiq
iq_dateDateRecommendedDate that IQ test was given
iqtestnameString255RecommendedName of IQ test given to participant
fxs_site_idIntegerRecommendedFragile X project site1=UC Davis, 2=Stanford, 3=Rush, 4=Duke, 5=UNC, 6=Colorado, 7=Johns Hopkins, 8=Wisconsin, 9=Indiana, 10=Other1 :: 101 = UC Davis; 2 = Stanford; 3 = Rush; 4 = Duke; 5 = UNC; 6 = Colorado; 7 = Johns Hopkins; 8 = Wisconsin; 9 = Indiana; 10 = Other
fxs_site_name_otherString50RecommendedEnter the site name if the code of 10 is used for the fxs_site_id data element to indicate a site that is not described with an id number
behavobs_handednessString25RecommendedHandednessR;L; A;NYE; 999R = Right-handed; L = Left-handed; A = Ambidextrous; NYE =not yet established; 999 = missing/refusedhandedness
resectionString100RecommendedAreas of the brain on which a surgical procedure performed after testingIndicates areas of the brain
path_chansString100RecommendedElectrodes that were disregarded from analysis due to pathological activity
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: fxs_demographics04 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.