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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.
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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.

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FXS Demographics

941 Shared Subjects

Demographic information as defined by Dr. Hessl's group from the Fragile X Project, MIND Institute, University of California, Davis
Clinical Assessments
Demographics
12/18/2012
fxs_demographics04
06/23/2017
View Change History
04
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 subject_code
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. age
interview_date Date Required Date on which the interview/genetic test/sampling/imaging/biospecimen was completed. MM/DD/YYYY
sex String 20 Required Sex of subject at birth M;F; O; NR M = Male; F = Female; O=Other; NR = Not reported gender
Query fmr1_status String 20 Required FMR1 DNA group Full Mutation; Mosaicism; Premutation Carrier; Unknown; Normal Range Fragile 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
Query phenotype String 200 Recommended Phenotype/diagnosis for the subject status_group
family_user_def_id String 25 Recommended Family Pedigree User-Defined ID
Query diag_group String 5 Required Enrollment diagnostic group of subject FX;CX;TD; TX; UX FX=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
Query family_diag_group String 5 Required Enrollment diagnostic group of family FX = Fragile X Syndrome
Query race String 30 Recommended Race of study subject American Indian/Alaska Native; Asian; Hawaiian or Pacific Islander; Black or African American; White; More than one race; Unknown or not reported; Other Non-White; Other
Query ethnicity String 30 Recommended Ethnicity of participant
Hispanic or Latino; Not Hispanic or Latino; Unknown
Query hh_income Integer Recommended Household income range of adult subject 1::6; 9 1 = 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
Query education_level Integer Recommended Highest level of education completed for adult subject 1::6; 9 1 = 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
Query marital_status Integer Recommended Marital status of adult subject 1::6; 9 1 = Married; 2 = Divorced; 3 = Single or never married; 4 = Widow or widower; 5=Remarried; 6=Separated 9 = Unknown
Query iq Integer Recommended IQ score as defined by the completion of an appropriate assessement fsiq
iq_date Date Recommended Date that IQ test was given
iqtestname String 255 Recommended Name of IQ test given to participant
Query fxs_site_id Integer Recommended Fragile X project site1=UC Davis, 2=Stanford, 3=Rush, 4=Duke, 5=UNC, 6=Colorado, 7=Johns Hopkins, 8=Wisconsin, 9=Indiana, 10=Other 1 :: 10 1 = UC Davis; 2 = Stanford; 3 = Rush; 4 = Duke; 5 = UNC; 6 = Colorado; 7 = Johns Hopkins; 8 = Wisconsin; 9 = Indiana; 10 = Other
fxs_site_name_other String 50 Recommended Enter 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
Query behavobs_handedness String 25 Recommended Handedness 1;2;3;NYE;999 1 = Right-handed; 2 = Left-handed; 3 = Ambidextrous; NYE =not yet established; 999 = missing/refused handedness
resection String 100 Recommended Areas of the brain on which a surgical procedure performed after testing Indicates areas of the brain
path_chans String 100 Recommended Electrodes 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

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