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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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Selected Filters
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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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PROMIS: Patient Reported Outcome Measurement Information System

promis

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/projectrecord_id
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
visitString50RecommendedVisit nameCharacter description of each type of visitpromis_date
promis_1IntegerRecommendedAre you able to do chores such as vacuuming or yard work?1::51=Unable to do; 2=With much difficulty; 3=With some difficulty; 4=With a little difficulty; 5=Without any difficultypfa11
promis_2IntegerRecommendedAre you able to go up and down stairs at a normal pace?1::51=Unable to do; 2=With much difficulty; 3=With some difficulty; 4=With a little difficulty; 5=Without any difficultypfa21
promis_3IntegerRecommendedAre you able to go for a walk of at least 15 minutes?1::51=Unable to do; 2=With much difficulty; 3=With some difficulty; 4=With a little difficulty; 5=Without any difficultypfa23
promis_4IntegerRecommendedAre you able to run errands and shop?1::51=Unable to do; 2=With much difficulty; 3=With some difficulty; 4=With a little difficulty; 5=Without any difficultypfa53
promis_5IntegerRecommendedI felt fearful1::51=Never; 2=Rarely; 3= Sometimes; 4=Often; 5=Always
promis_6IntegerRecommendedI found it hard to focus on anything other than my anxiety1::51=Never; 2=Rarely; 3= Sometimes; 4=Often; 5=Always
promis_7IntegerRecommendedMy worries overwhelmed me1::51=Never; 2=Rarely; 3= Sometimes; 4=Often; 5=Always
promis_8IntegerRecommendedI felt uneasy1::51=Never; 2=Rarely; 3= Sometimes; 4=Often; 5=Always
promis_9IntegerRecommendedI felt worthless1::51=Never; 2=Rarely; 3= Sometimes; 4=Often; 5=Always
promis_10IntegerRecommendedI felt helpless1::51=Never; 2=Rarely; 3= Sometimes; 4=Often; 5=Always
promis_11IntegerRecommendedI felt depressed1::51=Never; 2=Rarely; 3= Sometimes; 4=Often; 5=Always
promis_12IntegerRecommendedI felt hopeless1::51=Never; 2=Rarely; 3= Sometimes; 4=Often; 5=Always
promis_13IntegerRecommendedI feel fatigued1::51= Not at all; 2=A little bit; 3=Somewhat; 4=Quite a bit; 5= Very much
promis_14IntegerRecommendedI have trouble starting things because I am tired1::51= Not at all; 2=A little bit; 3=Somewhat; 4=Quite a bit; 5= Very much
promis_15IntegerRecommendedHow run-down did you feel on average?1::51= Not at all; 2=A little bit; 3=Somewhat; 4=Quite a bit; 5= Very much
promis_16IntegerRecommendedHow fatigued were you on average?1::51= Not at all; 2=A little bit; 3=Somewhat; 4=Quite a bit; 5= Very much
promis_17IntegerRecommendedMy sleep quality was1::51=Very good; 2=Good; 3=Fair; 4=Poor; 5=Very poor
promis_18IntegerRecommendedMy sleep was refreshing1::51=Very much; 2=Quite a bit; 3=Somewhat; 4=A little bit; 5=Not at all
promis_19IntegerRecommendedI had a problem with my sleep1::51= Not at all; 2=A little bit; 3=Somewhat; 4=Quite a bit; 5= Very much
promis_20IntegerRecommendedI had difficulty falling asleep1::51= Not at all; 2=A little bit; 3=Somewhat; 4=Quite a bit; 5= Very much
srpsat07IntegerRecommendedI am satisfied with how much work I can do (include work at home)1::55=Not at all; 4=A little bit; 3=Somewhat; 2=Quite a bit; 1=Very muchpromis_21
srpsat24IntegerRecommendedI am satisfied with my ability to work (include work at home)1::55=Not at all; 4=A little bit; 3=Somewhat; 2=Quite a bit; 1=Very muchpromis_22
promis_23IntegerRecommendedI am satisfied with my ability to do regular personal and household responsibilities1::51= Not at all; 2=A little bit; 3=Somewhat; 4=Quite a bit; 5= Very much
srpsat49IntegerRecommendedI am satisfied with my ability to perform my daily routines1::55=Not at all; 4=A little bit; 3=Somewhat; 2=Quite a bit; 1=Very muchpromis_24
promis_25IntegerRecommendedHow much did pain interfere with your day to day activities?1::51= Not at all; 2=A little bit; 3=Somewhat; 4=Quite a bit; 5= Very muchpainin9
promis_26IntegerRecommendedHow much did pain interfere with work around the home?1::51= Not at all; 2=A little bit; 3=Somewhat; 4=Quite a bit; 5= Very muchpainin22
promis_27IntegerRecommendedHow much did pain interfere with your ability to participate in social activities?1::51= Not at all; 2=A little bit; 3=Somewhat; 4=Quite a bit; 5= Very muchpainin31
promis_28IntegerRecommendedHow much did pain interfere with your household chores?1::51= Not at all; 2=A little bit; 3=Somewhat; 4=Quite a bit; 5= Very muchpainin34
promis_pain_intensityIntegerRecommendedHow would you rate your pain on average?0::100=No pain; 10=Worst imaginable pain
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: promis01 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.