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USDV4
Uniform Data Set version 4
UDSv4 - Template
United States
Reference ID
USDv4
Producer(s)
National Alzheimer’s Coordinating Center (NACC) and the NIA-funded ADRC network
Collections
Clinical Trial
Metadata
DDI/XML
JSON
Created on
Jul 02, 2026
Last modified
Jul 07, 2026
Page views
11412
Study Description
Data Dictionary
Data files
UDSv4TemplateForXMLD_2026-04-14_0731.REDCap.xml
Variable Groups
Form Header
Custom Instrument
A1 Participant Demographics
A1a Social Determinants of Health
A2 Co-participant demographics
A3 Participant Family History
A4 Participant Medications
A4a ADRD Specific Treatments
A5-D2: Participant Health History/Clinician-assessed Medical Conditions
B1 Vital Signs and Anthropometrics
B3 Unified Parkinson's Disease Rating Scale (UPDRS) - Motor Exam
B4 CDR Dementia Staging Instrument
B5 Neuropsychiatric Inventory Questionnaire (NPIQ)
B6 Geriatric Depression Scale
B7 Functional Assessment Scale (FAS)
B8 Neurological Examination Findings
B9 Clinician Judgment Of Symptoms
C2/C2T Neuropsychological Battery Scores
D1a Clinical Syndrome
D1b Etiological Diagnosis and Biomarker Support
Variable Groups
Variable group: B9 Clinician Judgment Of Symptoms
Variables
82
alcuse
12r1a. Alcohol use
b9_clinician_judgment_of_sy
mptoms_complete
Complete?
beaggrs
12k. Aggression - Does the participant shout angrily, slam doors, attempt to hit or hurt others, or exhibit other verbally or physically aggressive behaviors?
beagit
12f. Agitation - Is the participant easily distressed or angered, or hard to handle, or uncooperative, or resistive to care or to help from others?
beahall
12i. Psychosis - Auditory hallucinations
beahcomp
12i2. IF YES, do the auditory hallucinations include complex sounds like voices speaking words, or music?
beahsimp
12i1. IF YES, do the auditory hallucinations include simple sounds like knocks or other simple sounds?
beanger
12q. Explosive anger - Does the participant have a "short fuse"? Do they display explosive outbursts of anger or rage?
beanx
12c. Anxiety - Does the participant seem very nervous, worried, or frightened for no apparent reason? Do they seem very tense or fidgety? Do they seem afraid to be apart from caregivers or from others that they trust?
beapathy
12a. Apathy/withdrawal - Has the participant lost interest in the world around them, lost interest in doing things, or lack motivation for starting new activities?
bedel
12j. Delusions - Does the participant have fixed, idiosyncratic beliefs that are not true? For example, insisting that others are trying to harm them or steal from them? Have they said that family members or staff are not who they say they are, or that th
bedep
12b. Depressed mood - Does the participant seem sad or depressed, or say that they feel sad or depressed?
bedisin
12m. Disinhibition - Does the participant act impulsively without thinking, say things that are not usually done or said in public, or do things that are embarrassing to caregivers or others, or do they talk personally to strangers or have disregard for p
beempath
12o. Loss of empathy - Does the participant fail to take others' feelings into account?
beeuph
12d. Euphoria - Does the participant seem too cheerful or too happy for no reason, manifest a persistent and abnormally good mood, or find humor where others do not?
behage
12g. If any of the mood-related behavioral changes in 12a-12f are present, at what age did they begin? (The clinician must use their best judgment to estimate an age of onset. If multiple symptoms [loc_wdiffage:hideunderscore] are identified, denote the a
beirrit
12e. Irritability - Does the participant get irritated and easily disturbed? Are their moods very interchangeable? Are they abnormally impatient?
bemode
13. Overall mode of onset for behavioral symptoms {loc_bemode_lastvis}
bemodex
13a. Other mode of onset - specify
beobcom
12p. Obsessions and/or compulsions - Does the participant repeatedly and excessively focus on particular ideas or activities, or have they developed new habits, like physical behaviors or stereotypical verbal phrases?
beothr
12u. Participant currently manifests meaningful change in behavior? Other:
beothrx
12u1. Participant currently manifests meaningful change in behavior - Specify other:
beperch
12n. Personality change - Does the participant exhibit bizarre behavior or behavior uncharacteristic of the participant, such as unusual collecting, suspiciousness (without delusions), unusual dress, or unusual eating behaviors?
berem
12t. REM sleep behavior disorder - While sleeping, does the participant appear to repeatedly act out their dreams (e.g., punch or flail their arms, shout, or scream)?
beremago
12t1. IF YES, at what age did the dream enactment behavior begin?
beremconf
12t2. Was REM sleep behavior disorder confirmed by polysomnography?
besubab
12r. Substance use - Does the participant currently show evidence of excessive consumption of recreational, psychoactive, or typically abused substances (substantial increase compared with prior habits, and beyond medical necessity if prescribed substance
bevhall
12h. Psychosis - Visual hallucinations
bevpatt
12h1. IF YES, do their hallucinations include patterns that are not definite objects, such as pixelation of flat uniform surfaces?
bevwell
12h2. IF YES, do their hallucinations include well formed and detailed images of objects or people, either as independent images or as part of other objects?
cannabuse
12r1e. Cannabis use
cocaineuse
12r1d. Cocaine use
cogage
9i. If any of the cognitive symptoms in 9a-9h are present, at what age did they begin? (The clinician must use their best judgment to estimate an age of onset.)
cogattn
9f. Attention/concentration - Does the participant have a short attention span or limited ability to concentrate? Are they easily distracted?
cogfluc
9g. Fluctuating cognition - Does the participant exhibit pronounced variation in attention and alertness, noticeably over hours or days-for example, long lapses or periods of staring into space, or times when their ideas have a disorganized flow?
cogjudg
9c. Executive function (judgment, planning, and problem-solving) - Does the participant have trouble planning complex activities like trips, financial transactions, parties, or group meetings?
coglang
9d. Language - Does the participant have hesitant speech, have trouble finding words, use inappropriate words without self-correction, or have trouble with speech comprehension?
cogmem
9a. Memory - Does the participant forget conversations or dates, repeat questions or statements, or misplace things more than usual?
cogmode
10. Mode of onset of cognitive symptoms Indicate the mode of onset for the most prominent cognitive problem that is causing the participant's complaints and/or affecting the participant's function.
cogmodex
10a. Specify other mode of onset of cognitive symptoms
cogori
9b. Orientation - Does the participant have trouble knowing the day, month, and year, forget names of people they know well, get lost in familiar locations, or not recognize familiar locations?
cogothr
9h. Indicate whether the participant currently is meaningfully impaired in other cognitive domains
cogothrx
9h1. Specify other cognitive domains
cogvis
9e. Visuospatial function - Does the participant have difficulty interpreting visual stimuli or finding their way around in familiar environments?
course
19. Overall course of decline of cognitive/behavioral/motor syndrome:
decclbe
11. Based on the clinician's judgment, does the participant manifest clinically meaningful neuropsychiatric symptoms or meaningful change in behavior?
decclcog
8. Based on the clinician's judgment, is the participant currently experiencing meaningful impairment in cognition?
decclin
7. Does the participant have any neuropsychiatric/behavioral symptoms, decline in any cognitive domains, or changes in any motor domains?
decclmot
14. Based on the clinician's judgment, is the participant currently experiencing any meaningful changes in motor function?
deccog
1. Does the participant report a decline in any cognitive domain (relative to stable baseline prior to onset of current syndrome)?
deccogin
4. Does the co-participant report a decline in any cognitive domain (relative to stable baseline prior to onset of current syndrome)?
decmot
2. Does the participant report a change in any motor domain (relative to stable baseline prior to onset of current syndrome )?
decmotin
5. Does the co-participant report a change in any motor domain (relative to stable baseline prior to onset of current syndrome)?
frmdateb9
0a. B9 Clinical Judgement of Symptoms - Form date
frstchg
20. Indicate the predominant domain that was first recognized as changed in the participant:
initialsb9
0b. B9 Clinical Judgement of Symptoms - Examiner's initials
langb9
0c. B9 Clinical Judgement of Symptoms - Language
loc_subuse
12r1. Record substance(s) involved:
loc_wdiffage
Clause for ' with different ages '
modeb9
0d. B9 Clinical Judgement of Symptoms - In-person or remote?
moface
15f. Change in facial expression - Has the participant's facial expression changed or become more "wooden," or masked and unexpressive?
mofalls
15b. Falls - Has the participant had an increase in frequency of falls compared with their stable baseline prior to the current syndrome?
mogait
15a. Gait disorder - Has the participant's walking changed, not specifically due to arthritis, injury, or peripheral neuropathy? Are they unsteady, or do they shuffle when walking, have little or no arm-swing, or drag a foot?
molimb
15e. Limb weakness - Has the participant noticed a change (abrupt or gradual) in limb function such that an arm and/or leg is weak compared to their prior baseline?
momoals
18. Were changes in motor function suggestive of amyotrophic lateral sclerosis (ALS) (e.g., changes in muscle strength, or muscle twitches in one or more limbs, or slurred speech)?
momode
16. Mode of onset for motor symptoms: Indicate the mode of onset for the most prominent motor problem that is causing the participant's complaints and/or affecting the participant's function.
momodex
16a. Indicate mode of onset for the most prominent motor problem that is causing the participant's complains and or affecting the participant's function - Specify other
momopark
17. Were changes in motor function suggestive of parkinsonism?
moslow
15c. Slowness - Has the participant noticeably slowed down in walking, moving, or writing by hand, other than due to an injury or illness?
mospeech
15g. Change in speech - Has the participant noted a change in speech (abrupt or gradual) such that speech is slurred, or the ability to articulate the tongue and lips to form words and sentences has declined compared to their baseline?
motorage
15h. If changes in motor function are present in 15a-15g, at what age did they begin? (The clinician must use their best judgment to estimate an age of onset. If multiple symptoms [loc_wdiffage:hideunderscore] are identified, denote the age of the earlie
motrem
15d. Tremors - Has the participant had rhythmic shaking, especially in the hands, arms, legs, head, mouth, or tongue?
opiateuse
12r1c. Opiate use
othsubuse
12r1f. Other substance use
othsubusex
12r1f1. Specify other substance use
perchage
12s. If any of the personality-related behavioral changes in 12m-12r are present, at what age did they begin? (The clinician must use their best judgment to estimate an age of onset. If multiple symptoms [loc_wdiffage:hideunderscore] are identified, denot
psychage
12l. If any of the psychosis and impulse control-related behavioral symptoms in Q12h-Q12k are present, at what age did they begin? (The clinician must use their best judgment to estimate an age of onset. If multiple symptoms [loc_wdiffage:hideunderscore]
psychsym
3. Does the participant report the development of any significant neuropsychiatric/behavioral symptoms (relative to stable baseline prior to onset of current syndrome)?
psychsymin
6. Does the co-participant report the development of any significant neuropsychiatric/behavioral symptoms (relative to stable baseline prior to onset of current syndrome)?
rmmodeb9
0d1a. What modality was used to collect this remote 'B9 Clinical Judgement of Symptoms' form?
rmreasb9
0d1. If 'B9 Clinical Judgement of Symptoms' form was completed remotely, specify reason
seduse
12r1b. Sedative/hypnotic use
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