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NIMH Data Archive
NDA ABCD CCF OAI NIAAADA AMP SCZ HEAL

Alzheimer's Disease Related Quality of Life

419 Shared Subjects

N/A
Clinical Assessments
Quality of Life
05/28/2015
adrqlc01
03/22/2023
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 catieid
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 gender
Query visitid Integer Recommended MetaTrial Visit ID System variable: unique code for each type of visit -use to merge files
Query adrqla01 Integer Recommended He/She smiles or laughs when around other people 0;1 0=Disagree; 1= Agree
Query adrqla02 Integer Recommended He/She does not pay attention to the presence of others 0;1 0=Disagree; 1= Agree
Query adrqla03 Integer Recommended He/She will stay around other people 0;1 0=Disagree; 1= Agree
Query adrqla04 Integer Recommended He/She seeks contact with others by greeting peoplee or joining in conversations 0;1 0=Disagree; 1= Agree
Query adrqla05 Integer Recommended He/She talks with people. 0;1 0=Disagree; 1= Agree
Query adrqla06 Integer Recommended He/She touches or allows touching such as handshakes, hugs, kisses, pats 0;1 0=Disagree; 1= Agree
Query adrqla07 Integer Recommended He/She can be comforted or reassured by others 0;1 0=Disagree; 1= Agree
Query adrqla08 Integer Recommended He/She is not comfortable with strangers or people he/she doesnt recognize. 0;1 0=Disagree; 1= Agree
Query adrqla09 Integer Recommended He/She reacts with pleasure to pets or small children 0;1 0=Disagree; 1= Agree
Query adrqla10 Integer Recommended He/She talks with people on the telephone 0;1 0=Disagree; 1= Agree
Query adrqla11 Integer Recommended He/She becomes upset or angry when approached by another person 0;1 0=Disagree; 1= Agree
Query adrqla12 Integer Recommended He/She pushes, grabs or hits people 0;1 0=Disagree; 1= Agree
Query adrqlb01 Integer Recommended He/She talks about or still does things related to his/her previous work or daily activities 0;1 0=Disagree; 1= Agree
Query adrqlb02 Integer Recommended He/She is aware of his/her place in the family such as being a husband/wife, parent, grandparent 0;1 0=Disagree; 1= Agree
Query adrqlb03 Integer Recommended He/She makes or indicates choices in routine daily activities such as what to wear, what to eat, or where to sit 0;1 0=Disagree; 1= Agree
Query adrqlb04 Integer Recommended He/She becomes upset by personal limitations such as forgetting, losing things, or getting confused in familiar places 0;1 0=Disagree; 1= Agree
Query adrqlb05 Integer Recommended He/She shows interest in events, places or habits from his/her past such as old friends, former residences, church or prayer 0;1 0=Disagree; 1= Agree
Query adrqlb06 Integer Recommended He/She does not respond to his/her own name 0;1 0=Disagree; 1= Agree
Query adrqlb07 Integer Recommended He/She does not express beliefs or attitudes that he/she always had 0;1 0=Disagree; 1= Agree
Query adrqlb08 Integer Recommended He/She indicates yes or no by gesturing, nodding, or talking 0;1 0=Disagree; 1= Agree
Query adrqlc01 Integer Recommended He/She smiles or laughs or is cheerful 0;1 0=Disagree; 1= Agree
Query adrqlc02 Integer Recommended He/She squeezes, twists or wrings his/her hands 0;1 0=Disagree; 1= Agree
Query adrqlc03 Integer Recommended He/She throws, hits, kicks or bangs objects 0;1 0=Disagree; 1= Agree
Query adrqlc04 Integer Recommended He/She calls out or yells or curses or makes accusations 0;1 0=Disagree; 1= Agree
Query adrqlc05 Integer Recommended He/She locks or barricades himself/herself in his/her room/house/apartment 0;1 0=Disagree; 1= Agree
Query adrqlc06 Integer Recommended He/She is irritable or easily angered 0;1 0=Disagree; 1= Agree
Query adrqlc07 Integer Recommended He/She says he/she wants to die. 0;1 0=Disagree; 1= Agree
Query adrqlc08 Integer Recommended He/She cries, wails, or frowns. 0;1 0=Disagree; 1= Agree
Query adrqlc09 Integer Recommended He/She shows delight. 0;1 0=Disagree; 1= Agree
Query adrqlc10 Integer Recommended He/She is restless and wound up, or repeats actions such as rocking, pacing, or banging against walls 0;1 0=Disagree; 1= Agree
Query adrqlc11 Integer Recommended He/She resists help in different ways such as with dressing, eating or bathing, or by refusing to move 0;1 0=Disagree; 1= Agree
Query adrqlc12 Integer Recommended He/She clings to people or follows people around 0;1 0=Disagree; 1= Agree
Query adrqlc13 Integer Recommended He/She appears to be content or satisfied 0;1 0=Disagree; 1= Agree
Query adrqlc14 Integer Recommended He/She talks of feeling sick, having pain, or being cold 0;1 0=Disagree; 1= Agree
Query adrqlc15 Integer Recommended He/She shows a sense of humor. 0;1 0=Disagree; 1= Agree
Query adrqld01 Integer Recommended He/She enjoys doing activities alone such as listening to music or watching T.V. 0;1 0=Disagree; 1= Agree
Query adrqld02 Integer Recommended He/She does not take part in activies he/she used to enjoy, even when encouraged to take part 0;1 0=Disagree; 1= Agree
Query adrqld03 Integer Recommended He/She sits quietly and appears toenjoy the activity of others even though he/she is not actively participating 0;1 0=Disagree; 1= Agree
Query adrqld04 Integer Recommended He/She shows no signs of pleasure or enjoyment when taking part in leisure activities or recreation 0;1 0=Disagree; 1= Agree
Query adrqld05 Integer Recommended He/She dozes off or does nothing most of the time 0;1 0=Disagree; 1= Agree
Query adrqle01 Integer Recommended He/She gets enjoyment from or is calmed by his or her posessions or belongings 0;1 0=Disagree; 1= Agree
Query adrqle02 Integer Recommended He/She talks about feeling unsafe or says his/her belongings are not safe 0;1 0=Disagree; 1= Agree
Query adrqle03 Integer Recommended He/She is upset or unsettled when in places other than where he/she lives 0;1 0=Disagree; 1= Agree
Query adrqle04 Integer Recommended He/She makes repeated attempts to leave 0;1 0=Disagree; 1= Agree
Query adrqle05 Integer Recommended He/She is upset or unsettled in his/her living environment 0;1 0=Disagree; 1= Agree
Query adrqle06 Integer Recommended He/She is comfortable moving around where he/she lives 0;1 0=Disagree; 1= Agree
Query adrqle07 Integer Recommended He/She talks about wanting to leave or go home 0;1 0=Disagree; 1= Agree
Query visit String 60 Recommended Visit name
Query visnum Float Recommended Numeric 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
Query phase_ct String 20 Recommended Current 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 1 phase
Query si_total Float Recommended Social Interaction Domain Total Score 0::100 Refer 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.
Query as_total Float Recommended Awareness of Self Domain Total Score 0::100 Refer 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.
Query fm_total Float Recommended Feelings and Mood Domain Total Score 0::100 Refer 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.
Query ea_total Float Recommended Enjoyment of Activities Domain Total Score 0::100 Refer 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.
Query rs_total Float Recommended Response to Surroundings Domain Total Sc 0::100 Refer 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.
Query totadrql Float Recommended ADRQL Total Score 0::100 Refer 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.
Query last1 Integer Recommended Flag Last Phase 1/1A Visit 1=Yes for all records meeting this criteria
Query base1 Integer Recommended Flag Baseline Phase 1/1A Visit 1=Yes for all records meeting this criteria
Query base_ts Float Recommended Baseline Total Score Scare at Phase 1 baselline
Query base_si Float Recommended Baseline Social Interaction Domain Total Scare at Phase 1 baseline
Query base_as Float Recommended Baseline Awareness of Self Domain Total Scare at Phase 1 baseline
Query base_fm Float Recommended Baseline Feelings and Mood Domain Total Scare at Phase 1 baseline
Query base_ea Float Recommended Baseline Enjoyment of Activities Domain Scare at Phase 1 baseline
Query base_rs Float Recommended Baseline Response to Surroundings Total Scare at Phase 1 baseline
Query c_ts Float Recommended Changed from Baseline ADAS Total Score Change from Phase 1 baseline
Query c_si Float Recommended Change from Baseline Social Interaction Scare at Phase 1 baseline
Query c_as Float Recommended Change from Baseline Awareness of Self D Scare at Phase 1 baseline
Query c_fm Float Recommended Change from Baseline Feelings and Mood D Scare at Phase 1 baseline
Query c_ea Float Recommended Change from Baseline Enjoyment of Activi Scare at Phase 1 baseline
Query c_rs Float Recommended Change from Baseline Response to Surroun Scare 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

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