Loading...

Reset Password

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.

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.

You have logged in with a temporary password. Please update your password. Passwords must contain 8 or more characters and must contain at least 3 of the following types of characters:

Subscribe to our mailing list

Mailing List(s)
Email Format

You are now leaving the National Database for Autism Research (NDAR) web site to go to:

Click on the address above if the page does not change within 10 seconds.

Disclaimer

NDAR is not responsible for the content of this external site and does not monitor other web sites for accuracy.

Selected Filters
No filters selected

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
No filters have been selected

Alzheimer's Disease Related Quality of Life

adrqlc

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/projectcatieid
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
visitidIntegerRecommendedMetaTrial Visit IDSystem variable: unique code for each type of visit -use to merge files
adrqla01IntegerRecommendedHe/She smiles or laughs when around other people0;10=Disagree; 1= Agree
adrqla02IntegerRecommendedHe/She does not pay attention to the presence of others0;10=Disagree; 1= Agree
adrqla03IntegerRecommendedHe/She will stay around other people0;10=Disagree; 1= Agree
adrqla04IntegerRecommendedHe/She seeks contact with others by greeting peoplee or joining in conversations0;10=Disagree; 1= Agree
adrqla05IntegerRecommendedHe/She talks with people.0;10=Disagree; 1= Agree
adrqla06IntegerRecommendedHe/She touches or allows touching such as handshakes, hugs, kisses, pats0;10=Disagree; 1= Agree
adrqla07IntegerRecommendedHe/She can be comforted or reassured by others0;10=Disagree; 1= Agree
adrqla08IntegerRecommendedHe/She is not comfortable with strangers or people he/she doesnt recognize.0;10=Disagree; 1= Agree
adrqla09IntegerRecommendedHe/She reacts with pleasure to pets or small children0;10=Disagree; 1= Agree
adrqla10IntegerRecommendedHe/She talks with people on the telephone0;10=Disagree; 1= Agree
adrqla11IntegerRecommendedHe/She becomes upset or angry when approached by another person0;10=Disagree; 1= Agree
adrqla12IntegerRecommendedHe/She pushes, grabs or hits people0;10=Disagree; 1= Agree
adrqlb01IntegerRecommendedHe/She talks about or still does things related to his/her previous work or daily activities0;10=Disagree; 1= Agree
adrqlb02IntegerRecommendedHe/She is aware of his/her place in the family such as being a husband/wife, parent, grandparent0;10=Disagree; 1= Agree
adrqlb03IntegerRecommendedHe/She makes or indicates choices in routine daily activities such as what to wear, what to eat, or where to sit0;10=Disagree; 1= Agree
adrqlb04IntegerRecommendedHe/She becomes upset by personal limitations such as forgetting, losing things, or getting confused in familiar places0;10=Disagree; 1= Agree
adrqlb05IntegerRecommendedHe/She shows interest in events, places or habits from his/her past such as old friends, former residences, church or prayer0;10=Disagree; 1= Agree
adrqlb06IntegerRecommendedHe/She does not respond to his/her own name0;10=Disagree; 1= Agree
adrqlb07IntegerRecommendedHe/She does not express beliefs or attitudes that he/she always had0;10=Disagree; 1= Agree
adrqlb08IntegerRecommendedHe/She indicates yes or no by gesturing, nodding, or talking0;10=Disagree; 1= Agree
adrqlc01IntegerRecommendedHe/She smiles or laughs or is cheerful0;10=Disagree; 1= Agree
adrqlc02IntegerRecommendedHe/She squeezes, twists or wrings his/her hands0;10=Disagree; 1= Agree
adrqlc03IntegerRecommendedHe/She throws, hits, kicks or bangs objects0;10=Disagree; 1= Agree
adrqlc04IntegerRecommendedHe/She calls out or yells or curses or makes accusations0;10=Disagree; 1= Agree
adrqlc05IntegerRecommendedHe/She locks or barricades himself/herself in his/her room/house/apartment0;10=Disagree; 1= Agree
adrqlc06IntegerRecommendedHe/She is irritable or easily angered0;10=Disagree; 1= Agree
adrqlc07IntegerRecommendedHe/She says he/she wants to die.0;10=Disagree; 1= Agree
adrqlc08IntegerRecommendedHe/She cries, wails, or frowns.0;10=Disagree; 1= Agree
adrqlc09IntegerRecommendedHe/She shows delight.0;10=Disagree; 1= Agree
adrqlc10IntegerRecommendedHe/She is restless and wound up, or repeats actions such as rocking, pacing, or banging against walls0;10=Disagree; 1= Agree
adrqlc11IntegerRecommendedHe/She resists help in different ways such as with dressing, eating or bathing, or by refusing to move0;10=Disagree; 1= Agree
adrqlc12IntegerRecommendedHe/She clings to people or follows people around0;10=Disagree; 1= Agree
adrqlc13IntegerRecommendedHe/She appears to be content or satisfied0;10=Disagree; 1= Agree
adrqlc14IntegerRecommendedHe/She talks of feeling sick, having pain, or being cold0;10=Disagree; 1= Agree
adrqlc15IntegerRecommendedHe/She shows a sense of humor.0;10=Disagree; 1= Agree
adrqld01IntegerRecommendedHe/She enjoys doing activities alone such as listening to music or watching T.V.0;10=Disagree; 1= Agree
adrqld02IntegerRecommendedHe/She does not take part in activies he/she used to enjoy, even when encouraged to take part0;10=Disagree; 1= Agree
adrqld03IntegerRecommendedHe/She sits quietly and appears toenjoy the activity of others even though he/she is not actively participating0;10=Disagree; 1= Agree
adrqld04IntegerRecommendedHe/She shows no signs of pleasure or enjoyment when taking part in leisure activities or recreation0;10=Disagree; 1= Agree
adrqld05IntegerRecommendedHe/She dozes off or does nothing most of the time0;10=Disagree; 1= Agree
adrqle01IntegerRecommendedHe/She gets enjoyment from or is calmed by his or her posessions or belongings0;10=Disagree; 1= Agree
adrqle02IntegerRecommendedHe/She talks about feeling unsafe or says his/her belongings are not safe0;10=Disagree; 1= Agree
adrqle03IntegerRecommendedHe/She is upset or unsettled when in places other than where he/she lives0;10=Disagree; 1= Agree
adrqle04IntegerRecommendedHe/She makes repeated attempts to leave0;10=Disagree; 1= Agree
adrqle05IntegerRecommendedHe/She is upset or unsettled in his/her living environment0;10=Disagree; 1= Agree
adrqle06IntegerRecommendedHe/She is comfortable moving around where he/she lives0;10=Disagree; 1= Agree
adrqle07IntegerRecommendedHe/She talks about wanting to leave or go home0;10=Disagree; 1= Agree
visitString50RecommendedVisit nameCharacter description of each type of visit
visnumFloatRecommendedNumeric Visit Number-1.5 = Pre-Screening; -1 = Screening; 0 = Baseline; ## = Visit ## (from 1 to 10); Whole numbers = standard monthly visits; #.001 - #.009 = Unscheduled; #.1 = End of Phase 1; #.2 = End of Phase 2; #.3 = End of Phase 3; #.4 = End of Open Choice Phase; #.5 = End of Study; #.6 = Genetic Analysis; 1000=all visits
phase_ctString20RecommendedCurrent Phase. Phase patient was in at the time of the assessment Phase 4 refers to the follow-up phase.Pre-Rand; Phase 1/1A; Phase 2; Phase 3; Phase 4; Phase 1B; Open-Choice Phase; Screening; Phase 1phase
si_totalFloatRecommendedSocial Interaction Domain Total Score0::100Refer to the following document for complete scoring mechanism Black BS, Rabins, PV and Kasper JD (2000). Alzheimer disease related Quality of Life User's Manual. Baltimore MD, DEMeasure.
as_totalFloatRecommendedAwareness of Self Domain Total Score0::100Refer to the following document for complete scoring mechanism Black BS, Rabins, PV and Kasper JD (2000). Alzheimer disease related Quality of Life User's Manual. Baltimore MD, DEMeasure.
fm_totalFloatRecommendedFeelings and Mood Domain Total Score0::100Refer to the following document for complete scoring mechanism Black BS, Rabins, PV and Kasper JD (2000). Alzheimer disease related Quality of Life User's Manual. Baltimore MD, DEMeasure.
ea_totalFloatRecommendedEnjoyment of Activities Domain Total Score0::100Refer to the following document for complete scoring mechanism Black BS, Rabins, PV and Kasper JD (2000). Alzheimer disease related Quality of Life User's Manual. Baltimore MD, DEMeasure.
rs_totalFloatRecommendedResponse to Surroundings Domain Total Sc0::100Refer to the following document for complete scoring mechanism Black BS, Rabins, PV and Kasper JD (2000). Alzheimer disease related Quality of Life User's Manual. Baltimore MD, DEMeasure.
totadrqlFloatRecommendedADRQL Total Score0::100Refer to the following document for complete scoring mechanism Black BS, Rabins, PV and Kasper JD (2000). Alzheimer disease related Quality of Life User's Manual. Baltimore MD, DEMeasure.
last1IntegerRecommendedFlag Last Phase 1/1A Visit1=Yes for all records meeting this criteria
base1IntegerRecommendedFlag Baseline Phase 1/1A Visit1=Yes for all records meeting this criteria
base_tsFloatRecommendedBaseline Total ScoreScare at Phase 1 baselline
base_siFloatRecommendedBaseline Social Interaction Domain TotalScare at Phase 1 baseline
base_asFloatRecommendedBaseline Awareness of Self Domain TotalScare at Phase 1 baseline
base_fmFloatRecommendedBaseline Feelings and Mood Domain TotalScare at Phase 1 baseline
base_eaFloatRecommendedBaseline Enjoyment of Activities DomainScare at Phase 1 baseline
base_rsFloatRecommendedBaseline Response to Surroundings TotalScare at Phase 1 baseline
c_tsFloatRecommendedChanged from Baseline ADAS Total ScoreChange from Phase 1 baseline
c_siFloatRecommendedChange from Baseline Social InteractionScare at Phase 1 baseline
c_asFloatRecommendedChange from Baseline Awareness of Self DScare at Phase 1 baseline
c_fmFloatRecommendedChange from Baseline Feelings and Mood DScare at Phase 1 baseline
c_eaFloatRecommendedChange from Baseline Enjoyment of ActiviScare at Phase 1 baseline
c_rsFloatRecommendedChange from Baseline Response to SurrounScare at Phase 1 baseline
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: adrqlc01 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.