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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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Filter Cart

Viewable at the top right of NDA pages, the Filter Cart is a temporary holder for filters and data they select. Filters are added to the Workspace first, before being submitted to The Filter Cart. Data selected by filters in the Filter Cart can be added to a Data Package or an NDA Study from the Data Packaging Page, by clicking the 'Create Data Package / Add Data to Study' button.

The filter cart supports combining multiple filters together, and depending on filter type will use "AND" or "OR" when combining filters.

Multiple selections from the same filter type will result in those selections being applied with an ‘OR’ condition. For example, if you add an NDA Collection Filter with selections for both collections 2112 and 2563 to an empty Workspace, the subjects from NDA Collection 2112 ‘OR’ NDA Collection 2563 will be added to your Workspace even if a subject is in both NDA Collections. You can then add other NDA Collections to your Workspace which further extends the ‘OR’ condition.

If a different filter type is added to your Workspace, or a filter has already been submitted to the Filter Cart, the operation then performs a logical ‘AND’ operation. This means that given the subjects returned from the first filter, only those subjects that matched the first filter are returned by the second filter (i.e., subjects that satisfied both filters).

When combining other filters with the GUID filter, please note the GUID filter should be added last. Otherwise, preselected data may be lost. For example, a predefined filter from Featured Datasets may select a subset of data available for a subject. When combined with a GUID filter for the same subject, the filter cart will contain all data available from that subject, data structure, and dataset; this may be more data than was selected in the predefined filter for that subject. Again, you should add the GUID Filter as the last filter to your cart. This ensures 'AND' logic between filters and will limit results to the subjects, data structures, and datasets already included in your filter cart.

Note that only the subjects specific to your filter will be added to your Filter Cart and only on data shared with the research community. Other data for those same subjects may exist (i.e., within another NDA Collection, associated with a data structure that was not requested in the query, etc.). So, users should select ‘Find all Subjects Data’ to identify all data for those specific subjects.

Additional Tips:

  • You may query the data without an account, but to gain access you will need to create an NDA user account and apply for access. Most data access requires that you or your lab are sponsored by an NIH recognized institution with Federal Wide Assurance (FWA). Without access, you will not be able to obtain individual-level data.

Once you have selected data of interest you can:

  • Create a data package - This allows you to specify format for access/download
  • Assign to Study Cohort - Associate the data to an NDA Study allowing for a DOI to be generated and the data to be linked directly to a finding, publication, or data release.
  • Find All Subject Data - Depending on filter types being used, not all data associated with a subject will be selected. Data may be restricted by data structure, NDA Collection, or outcome variables (e.g., NDA Study). ‘Find All Data’ expands the filter criteria by replacing all filters in your Filter Cart with a single Query by GUID filter for all subjects selected by those filters.

Please Note:

  • When running a query, it may take a moment to populate the Filter Cart. Queries happen in the background so you can define other queries during this time.
  • When you add your first filter, all data associated with your query will be added to the Filter Cart (e.g., a Concept, an NDA Collection, a Data Structure/Element, etc.). As you add additional filters, they will also display in the Filter Cart. Only the name of filter will be shown in the Filter Cart, not the underlying structures.
  • Information about the contents of the Filter Cart can be seen by clicking "Edit”.
  • Once your results appear in the Filter Cart, you can create a data package or assign subjects to a study by selecting the 'Package/Assign to Study' option. You can also 'Edit' or 'Clear' filters.

Frequently Asked Questions

  • What is a Filter Cart?
    Viewable at the top right of NDA pages, the Filter Cart is a temporary holder of data identified by the user, through querying or browsing, as being of some potential interest. The Filter Cart is where you send the data from your Workspace after it has been filtered.
  • What do I do after filters are added to the Filter Cart?
    After filters are added to the Filter Cart, users have options to ‘Create a Package’ for download, ‘Associate to Study Cohort’, or ‘Find All Subject Data’. Selecting ‘Find All Subject Data’ identifies and pulls all data for the subjects into the Filter Cart. Choosing ‘Create a Package’ allows users to package and name their query information for download. Choosing ‘Associate to Study Cohort’ gives users the opportunity to choose the Study Cohort they wish to associate this data.
  • Are there limitations on the amount of data a user can download?

    NDA limits the rate at which individual users can transfer data out of Amazon Web Services (AWS) S3 Object storage to non-AWS internet addresses. All users have a download limit of 20 Terabytes. This limit applies to the volume of data an individual user can transfer within a 30-day window. Only downloads to non-AWS internet addresses will be counted against the limit.

  • How does Filter Cart Boolean logic work?

    The Filter Cart currently employs basic AND/OR Boolean logic. A single filter may contain multiple selections for that filter type, e.g., a single NDA Study filter might contain NDA Study 1 and NDA Study 2. A subject that is in EITHER 1 OR 2 will be returned. Adding multiple filters to the cart, regardless of type, will AND the result of each filter. If NDA Study 1 and NDA Study 2 are added as individual filters, data for a subject will only be selected if the subject is included in BOTH 1 AND 2.

    When combining other filters with the GUID filter, please note the GUID filter should be added last. Otherwise, preselected data may be lost. For example, a predefined filter from Featured Datasets may select a subset of data available for a subject. When combined with a GUID filter for the same subject, the filter cart will contain all data available from that subject, data structure, and dataset; this may be more data than was selected in the predefined filter for that subject. Again, you should add the GUID Filter as the last filter to your cart. This ensures 'AND' logic between filters and will limit results to the subjects, data structures, and datasets already included in your filter cart.

Glossary

  • Workspace
    The Workspace within the General Query Tool is a holding area where you can review your pending filters prior to adding them to Filter Cart. Therefore, the first step in accessing data is to select one or more items and move it into the Workspace.
  • Filter Cart
    Viewable at the top right of NDA pages, the Filter Cart is a temporary holder of data identified by the user through querying or browsing as being of some potential interest. The Filter Cart adds data using an AND condition. The opportunity to further refine data to determine what will be downloaded or sent to a miNDAR is available on the Data Packaging Page, the next step after the Filter Cart. Subsequent access to data is restricted by User Permission or Privilege; however Filter Cart use is not.
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Family Quality of Life Assessment

270 Shared Subjects

Family Quality of Life Assessment
Clinical Assessments
Quality of Life
10/04/2012
famqol01
07/13/2020
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* GUID
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 cg_interview_date
interview_age Integer Required Age in months at the time of the interview/test/sampling/imaging. 0 :: 1260 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. cg_Months_Difference
sex String 20 Required Sex of subject at birth M;F; O; NR M = Male; F = Female; O=Other; NR = Not reported chi_gen, gender
comments_misc String 4,000 Recommended Miscellaneous comments on study, interview, methodology relevant to this form data cg_comments_misc
Query cg_enjoytime Integer Recommended My family enjoys spending time together. Frequency 1::5 1 = Never; 2 = Sometimes; 3 = Generally; 4 = Mostly; 5 = Always q55
Query cg_talkopen Integer Recommended My family members talk openly with each other. Frequency 1::5 1 = Never; 2 = Sometimes; 3 = Generally; 4 = Mostly; 5 = Always q56
Query cg_solveprob Integer Recommended Our family solves problems together. Frequency 1::5 1 = Never; 2 = Sometimes; 3 = Generally; 4 = Mostly; 5 = Always q57
Query cg_support Integer Recommended My family members support each other to accomplish goals. Frequency 1::5 1 = Never; 2 = Sometimes; 3 = Generally; 4 = Mostly; 5 = Always q58
Query cg_showlove Integer Recommended My family members show that they love and care for each other. Frequency 1::5 1 = Never; 2 = Sometimes; 3 = Generally; 4 = Mostly; 5 = Always q59
Query cg_updown Integer Recommended My family is able to handle life’s ups and downs. Frequency 1::5 1 = Never; 2 = Sometimes; 3 = Generally; 4 = Mostly; 5 = Always q60
Query cg_help_indep Integer Recommended My family members help the children learn to be independent. Frequency 1::5 1 = Never; 2 = Sometimes; 3 = Generally; 4 = Mostly; 5 = Always q61
Query cg_help_scl Integer Recommended My family members help the children with schoolwork and activities. Frequency 1::5 1 = Never; 2 = Sometimes; 3 = Generally; 4 = Mostly; 5 = Always q62
Query cg_getalong Integer Recommended My family members teach the children how to get along with others. Frequency 1::5 1 = Never; 2 = Sometimes; 3 = Generally; 4 = Mostly; 5 = Always q63
Query cg_gdchoice Integer Recommended Adults in our family teach the children to make good decisions. Frequency 1::5 1 = Never; 2 = Sometimes; 3 = Generally; 4 = Mostly; 5 = Always q64
Query cg_otherppl Integer Recommended Adults in my family know other people in the children’s lives (friends, teachers, etc.). Frequency 1::5 1 = Never; 2 = Sometimes; 3 = Generally; 4 = Mostly; 5 = Always q65
Query cg_indiv_need Integer Recommended Adults in my family have time to take care of the individual needs of every child. Frequency 1::5 1 = Never; 2 = Sometimes; 3 = Generally; 4 = Mostly; 5 = Always q66
Query cg_spt_stress Integer Recommended My family has the support we need to relieve stress. Frequency 1::5 1 = Never; 2 = Sometimes; 3 = Generally; 4 = Mostly; 5 = Always q67
Query cg_othershelp Integer Recommended My family members have friends or others who provide support. Frequency 1::5 1 = Never; 2 = Sometimes; 3 = Generally; 4 = Mostly; 5 = Always q68
Query cg_ownint Integer Recommended My family members have some time to pursue our own interests. Frequency 1::5 1 = Never; 2 = Sometimes; 3 = Generally; 4 = Mostly; 5 = Always q69
Query cg_specneeds Integer Recommended My family has outside help available to us to take care of special needs of all family members. Frequency 1::5 1 = Never; 2 = Sometimes; 3 = Generally; 4 = Mostly; 5 = Always q70
Query cg_transp Integer Recommended My family members have transportation to get to the places they need to be. Frequency 1::5 1 = Never; 2 = Sometimes; 3 = Generally; 4 = Mostly; 5 = Always q71
Query cg_dental Integer Recommended My family gets dental care when needed. Frequency 1::5 1 = Never; 2 = Sometimes; 3 = Generally; 4 = Mostly; 5 = Always q72
Query cg_medical Integer Recommended My family gets medical care when needed. Frequency 1::5 1 = Never; 2 = Sometimes; 3 = Generally; 4 = Mostly; 5 = Always q73
Query cg_expenses Integer Recommended My family has a way to take care of our expenses. Frequency 1::5 1 = Never; 2 = Sometimes; 3 = Generally; 4 = Mostly; 5 = Always q74
Query cg_safe Integer Recommended My family feels safe at home, work, school, and in our neighborhood. Frequency 1::5 1 = Never; 2 = Sometimes; 3 = Generally; 4 = Mostly; 5 = Always q75
Query cg_mem_schsup Integer Recommended My family member with a disability has support to accomplish goals at school or at workplace. Frequency 1::5 1 = Never; 2 = Sometimes; 3 = Generally; 4 = Mostly; 5 = Always q76
Query cg_mem_homsup Integer Recommended My family member with a disability has support to accomplish goals at home. Frequency 1::5 1 = Never; 2 = Sometimes; 3 = Generally; 4 = Mostly; 5 = Always q77
Query cg_mem_frisup Integer Recommended My family member with a disability has support to make friends. Frequency 1::5 1 = Never; 2 = Sometimes; 3 = Generally; 4 = Mostly; 5 = Always q78
Query cg_prov_rel Integer Recommended My family has good relationships with the service providers who provide services and support to our family member with a disability. Frequency 1::5 1 = Never; 2 = Sometimes; 3 = Generally; 4 = Mostly; 5 = Always q79
famq08 Integer Recommended My family members teach the children how to get along with others. Satisfaction 1::5 1=Very Dissatisfied; 2= Dissatisfied; 3=Neither; 4=Satisfied; 5=Very Satisfied
famq09 Integer Recommended My family members have some time to pursue our own interests. Satisfaction 1::5 1=Very Dissatisfied; 2= Dissatisfied; 3=Neither; 4=Satisfied; 5=Very Satisfied
famq10 Integer Recommended Our family solves problems together. Satisfaction 1::5 1=Very Dissatisfied; 2= Dissatisfied; 3=Neither; 4=Satisfied; 5=Very Satisfied
famq11 Integer Recommended My family members support each other to accomplish goals. Satisfaction 1::5 1=Very Dissatisfied; 2= Dissatisfied; 3=Neither; 4=Satisfied; 5=Very Satisfied
famq12 Integer Recommended My family members show that they love and care for each other. Satisfaction 1::5 1=Very Dissatisfied; 2= Dissatisfied; 3=Neither; 4=Satisfied; 5=Very Satisfied
famq13 Integer Recommended My family has outside help available to us to take care of special needs of all family members. Satisfaction 1::5 1=Very Dissatisfied; 2= Dissatisfied; 3=Neither; 4=Satisfied; 5=Very Satisfied
famq14 Integer Recommended Adults in our family teach the children to make good decisions. Satisfaction 1::5 1=Very Dissatisfied; 2= Dissatisfied; 3=Neither; 4=Satisfied; 5=Very Satisfied
famq15 Integer Recommended My family gets medical care when needed. Satisfaction 1::5 1=Very Dissatisfied; 2= Dissatisfied; 3=Neither; 4=Satisfied; 5=Very Satisfied
famq16 Integer Recommended My family has a way to take care of our expenses. Satisfaction 1::5 1=Very Dissatisfied; 2= Dissatisfied; 3=Neither; 4=Satisfied; 5=Very Satisfied
famq17 Integer Recommended Adults in my family know other people in the children?s lives (friends, teachers, etc.). Satisfaction 1::5 1=Very Dissatisfied; 2= Dissatisfied; 3=Neither; 4=Satisfied; 5=Very Satisfied
famq18 Integer Recommended My family is able to handle life?s ups and downs. Satisfaction 1::5 1=Very Dissatisfied; 2= Dissatisfied; 3=Neither; 4=Satisfied; 5=Very Satisfied
famq19 Integer Recommended Adults in my family have time to take care of the individual needs of every child. Satisfaction 1::5 1=Very Dissatisfied; 2= Dissatisfied; 3=Neither; 4=Satisfied; 5=Very Satisfied
famq20 Integer Recommended My family gets dental care when needed. Satisfaction 1::5 1=Very Dissatisfied; 2= Dissatisfied; 3=Neither; 4=Satisfied; 5=Very Satisfied
famq21 Integer Recommended My family feels safe at home, work, school, and in our neighborhood. Satisfaction 1::5 1=Very Dissatisfied; 2= Dissatisfied; 3=Neither; 4=Satisfied; 5=Very Satisfied
famq22 Integer Recommended My family member with a disability has support to accomplish goals at school or at workplace. Satisfaction 1::5 1=Very Dissatisfied; 2= Dissatisfied; 3=Neither; 4=Satisfied; 5=Very Satisfied
famq23 Integer Recommended My family member with a disability has support to accomplish goals at home. Satisfaction 1::5 1=Very Dissatisfied; 2= Dissatisfied; 3=Neither; 4=Satisfied; 5=Very Satisfied
famq24 Integer Recommended My family member with a disability has support to make friends. Satisfaction 1::5 1=Very Dissatisfied; 2= Dissatisfied; 3=Neither; 4=Satisfied; 5=Very Satisfied
famq25 Integer Recommended My family has good relationships with the service providers who provide services and support to our family member with a disability. Satisfaction 1::5 1=Very Dissatisfied; 2= Dissatisfied; 3=Neither; 4=Satisfied; 5=Very Satisfied
famq01 Integer Recommended My family enjoys spending time together. Satisfaction 1::5 1=Very Dissatisfied; 2= Dissatisfied; 3=Neither; 4=Satisfied; 5=Very Satisfied
famq02 Integer Recommended My family members help the children learn to be independent. Satisfaction 1::5 1=Very Dissatisfied; 2= Dissatisfied; 3=Neither; 4=Satisfied; 5=Very Satisfied
famq03 Integer Recommended My family has the support we need to relieve stress. Satisfaction 1::5 1=Very Dissatisfied; 2= Dissatisfied; 3=Neither; 4=Satisfied; 5=Very Satisfied
famq04 Integer Recommended My family members have friends or others who provide support. Satisfaction 1::5 1=Very Dissatisfied; 2= Dissatisfied; 3=Neither; 4=Satisfied; 5=Very Satisfied
famq05 Integer Recommended My family members help the children with schoolwork and activities. Satisfaction 1::5 1=Very Dissatisfied; 2= Dissatisfied; 3=Neither; 4=Satisfied; 5=Very Satisfied
famq06 Integer Recommended My family members have transportation to get to the places they need to be. Satisfaction 1::5 1=Very Dissatisfied; 2= Dissatisfied; 3=Neither; 4=Satisfied; 5=Very Satisfied
famq07 Integer Recommended My family members talk openly with each other. Satisfaction 1::5 1=Very Dissatisfied; 2= Dissatisfied; 3=Neither; 4=Satisfied; 5=Very Satisfied
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.