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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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Age of Ataxia Onset

214 Shared Subjects

Age at which ataxia symptoms such as walking, speech, vision orand other problems were first noticable.
Clinical Assessments
Symptom History
02/04/2021
ageofatax01
12/20/2023
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
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
atxonset01 Integer Recommended Do you have symptoms of ataxia? 0;1 0=No; 1=Yes
atxonset02 Integer Recommended At what age or year did the following disease symptoms occur first? Walking Problems 99=Unknown; 999=NA
atxonset03 Integer Recommended At what age or year did the following disease symptoms occur first? Speech Problems 99=Unknown; 999=NA
atxonset04 Integer Recommended At what age or year did the following disease symptoms occur first? Vision Problems 99=Unknown; 999=NA
atxonset05 Integer Recommended At what age or year did the following disease symptoms occur first? Other 99=Unknown; 999=NA
atxonset06 String 225 Recommended Specify Other
atxonset07 Integer Recommended Do you know your genetic status? 0;1 0=No; 1=Yes
atxonset08 Integer Recommended Do you want to know your genetic status? 0;1 0=No; 1=Yes
functstg01 Float Recommended Functional Stage of Ataxia(Increment of 0.5 may be used if the status is between two stages): 0=Normal; 1=Minimal signs detected by physician during screening. Can run or jump without loss of balance. No disability; 2=Symptoms present, recognized by patient, but still mild. Cannot run or jump without losing balance. The patient is physically capable of leading an independent life, but daily activities may be somewhat restricted. Minimal disability; 3=Symptoms are overt and significant. Requires regular or periodic holding onto wall/furniture or use of a cane for stability and walking. Mild disability; 4=Walking requires a walker, Canadian crutches or two canes. Or other aids such as walking dogs. Can perform several activities of daily living. Moderate disability; 5=Confined but can navigate a wheelchair. Can perform some activities of daily living that do not require standing or walking. Severe disability; 6=Confined to wheelchair or bed with total dependency for all activities of daily living. Total disability.
atxonset06_5 String 225 Recommended Specify Other (fifth)
atxonset05_2 Integer Recommended At what age or year did the following disease symptoms occur first? Other (second) 99=Unknown; 999=NA
atxonset05_3 Integer Recommended At what age or year did the following disease symptoms occur first? Other (third) 99=Unknown; 999=NA
atxonset05_4 Integer Recommended At what age or year did the following disease symptoms occur first? Other (fourth) 99=Unknown; 999=NA
atxonset05_5 Integer Recommended At what age or year did the following disease symptoms occur first? Other (fifth) 99=Unknown; 999=NA
atxonset06_2 String 225 Recommended Specify Other (second)
atxonset06_3 String 225 Recommended Specify Other (third)
atxonset06_4 String 225 Recommended Specify Other (fourth)
visit String 60 Recommended Visit name
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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