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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
11405
  • 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: D1a Clinical Syndrome
Variables 181
alcdem
27. Cognitive impairment due to alcohol use or abuse
alcdemif
27a. Cognitive impairment due to alcohol abuse (primary/contributing/non-contributing)
amndem
8a. Amnestic predominant syndrome
anxiet
14. Anxiety disorder (DSM-5-TR criteria*)
anxietif
14a. Anxiety disorder (primary/contributing/non-contributing)
apneadx
25. Sleep apnea (i.e., obstructive, central, mixed or complex sleep apnea)
apneadxif
25a. Sleep apnea (i.e., obstructive, central, mixed or complex sleep apnea) (primary/contributing/non-contributing)
bdomafreg
7b. MBI affected domains - Affective regulation
bdomimp
7c. MBI affected domains - Impulse control
bdommot
7a. MBI affected domains - Motivation
bdomsocial
7d. MBI affected domains - Social appropriateness
bdomthts
7e. MBI affected domains - Thought content/perception
bipoldif
12a. Bipolar disorder (primary/contributing/non-contributing)
bipoldx
12. Bipolar disorder (DSM-5-TR criteria*)
cbssyn
8j. Corticobasal syndrome (CBS) syndrome
cdomaprax
6g. Dementia and MCI affected domains - Apraxia
cdomattn
6c. Dementia and MCI affected domains - Attention
cdombeh
6f. Dementia and MCI affected domains - Behavioral
cdomexec
6d. Dementia and MCI affected domains - Executive
cdomlang
6b. Dementia and MCI affected domains - Language
cdommem
6a. Dementia and MCI affected domains - Memory
cdomvisu
6e. Dementia and MCI affected domains - Visuospatial
cogoth
30. Cognitive impairment not otherwise specified (NOS)
cogoth2
31. Cognitive impairment not otherwise specified (NOS)
cogoth2f
31a. Cognitive impairment NOS (primary/contributing/non-contributing)
cogoth2x
31b. Cognitive impairment NOS (specify)
cogoth3
32. Cognitive impairment not otherwise specified (NOS)
cogoth3f
32a. Cognitive impairment NOS (primary/contributing/non-contributing)
cogoth3x
32b. Cognitive impairment NOS (specify)
cogothif
30a. Cognitive impairment NOS (primary/contributing/non-contributing)
cogothx
30b. Cognitive impairment NOS (specify)
ctesyn
8i. Traumatic encephalopathy syndrome
d1a_clinical_syndrome_compl
ete
Complete?
delir
17. Delirium (DSM-5-TR criteria*)
delirif
17a. Delirium (primary/contributing/non-contributing)
demented
3. Does the participant meet the criteria for dementia?
dxmethod
1. Diagnosis method-responses in this form are based on diagnosis by a:
dyexecsyn
8b. Dysexecutive predominant syndrome
epilep
20. Epilepsy
epilepif
20a. Epilepsy (primary/contributing/non-contributing)
frmdated1a
0a. D1a Clinical Diagnosis - Form date
ftdsyn
8e. Behavioral variant frontotemporal (bvFTD) syndrome
genanx
14b. Generalized anxiety disorder
hiv
23. Human immunodeficiency virus (HIV) infection
hivif
23a. Human Immunodeficiency Virus (HIV) infection (primary/contributing/non-contributing)
hyceph
21. Normal-pressure hydrocephalus
hycephif
21a. Normal-pressure hydrocephalus (primary/contributing/non-contributing)
impnomci
5b. Does the participant meet any criteria for cognitively impaired, not MCI/dementia?
impnomcicg
5a2. Cognitively impaired, not MCI reason - Cognitive testing is abnormal but no clinical concern or functional decline (e.g., CDR SB=0 and FAS=0)
impnomcifu
5a1. Cognitively impaired, not MCI reason - Evidence of functional impairment (e.g., CDR SB>0 and/or FAS>0), but available cognitive testing is judged to be normal
impnomcio
5a4. Cognitively impaired, not MCI reason - Other
impnomciox
5a4a. Cognitively impaired, not MCI reason - Other (specify)
impnomclcd
5a3. Cognitively impaired, not MCI reason - Longstanding cognitive difficulties, not representing a change from their usual function
impsub
28. Cognitive impairment due to substance use or abuse
impsubif
28a. Cognitive impairment due to substance use or abuse (primary/contributing/non-contributing)
initialsd1a
0b. D1a Clinical Diagnosis - Examiner's Initials
langd1a
0c. D1a Clinical Diagnosis - Language
lbdsyn
8f. Lewy body syndrome
lbdsynt
8f1. If present, select one:
loc_alcdem
27. Cognitive impairment due to alcohol use or abuse
loc_alcdemif
alcdemif primary?
loc_anxiet
14. Anxiety disorder (DSM-5-TR criteria*)
loc_anxietif
anxietif primary?
loc_apneadx
25. Sleep apnea (i.e., obstructive, central, mixed or complex sleep apnea)
loc_apneadxif
apneadxif primary?
loc_bipoldif
bipoldif primary?
loc_bipoldx
12. Bipolar disorder (DSM-5-TR criteria*)
loc_cdomaprax
6g. Dementia and MCI affected domains - Apraxia
loc_cdomattn
6c. Dementia and MCI affected domains - Attention
loc_cdombeh
6f. Dementia and MCI affected domains - Behavioral
loc_cdomexec
6d. Dementia and MCI affected domains - Executive
loc_cdomlang
6b. Dementia and MCI affected domains - Language
loc_cdommem
6a. Dementia and MCI affected domains - Memory
loc_cdomvisu
6e. Dementia and MCI affected domains - Visuospatial
loc_cogoth
30. Cognitive impairment not otherwise specified (NOS)
loc_cogoth2
31. Cognitive impairment not otherwise specified (NOS)
loc_cogoth2f
cogoth2f primary?
loc_cogoth3
32. Cognitive impairment not otherwise specified (NOS)
loc_cogoth3f
cogoth3f primary?
loc_cogothif
cogothif primary?
loc_d1a_condall
Sum of D1a Diagnoses 10-32 marked as primary
loc_d1a_condset1
Sum of D1a Conditions 10-14 marked as primary
loc_d1a_condset2
Sum of D1a Conditions 15-18 marked as primary
loc_d1a_condset3
Sum of D1a Conditions 19-22 marked as primary
loc_d1a_condset4
Sum of D1a Conditions 23-26 marked as primary
loc_d1a_condset5
Sum of D1a Conditions 27-32 marked as primary
loc_delir
17. Delirium (DSM-5-TR criteria*)
loc_delirif
delirif primary?
loc_epilep
20. Epilepsy
loc_epilepif
epilepif primary?
loc_genanx
14b. Generalized anxiety disorder
loc_hiv
23. Human immunodeficiency virus (HIV) infection
loc_hivif
hivif primary?
loc_hyceph
21. Normal-pressure hydrocephalus
loc_hycephif
hycephif primary?
loc_impnomci
5. Cognitively impaired, not MCI reason
loc_impnomci_sum
D1a Sum of questions 5a1 - 5a4
loc_impsub
28. Cognitive impairment due to substance use or abuse
loc_impsubif
impsubif primary?
loc_majdepdif
majdepdif primary?
loc_majdepdx
10. Major depressive disorder (DSM-5-TR criteria*)
loc_mcicrit
4. MCI core clinical criteria
loc_mcicrit_sum
D1a Sum of questions 4a1 - 4a3
loc_meds
29. Cognitive impairment due to medications
loc_medsif
medsif primary?
loc_ndevdis
16. Developmental neuropsychiatric disorders (e.g., autism spectrum disorder (ASD), attention-deficit hyperactivity disorder (ADHD), dyslexia)
loc_ndevdisif
ndevdisif primary?
loc_neop
22. CNS Neoplasm
loc_neopif
neopif primary?
loc_ocddx
14d. Obsessive-compulsive disorder (OCD)
loc_othanxd
14e. Other anxiety disorder
loc_othcillif
othcillif primary?
loc_othcogill
26. Cognitive impairment due to other neurologic, genetic, infectious conditions (not listed above), or systemic disease/medical illness (as indicated on Form A5/D2)
loc_othdepdif
othdepdif primary?
loc_othdepdx
11. Other specified depressive disorder (DSM-5-TR criteria*)
loc_othpsy
18. Other psychiatric disorder (DSM-5-TR criteria*)
loc_othpsyif
othpsyif primary?
loc_panicdisdx
14c. Panic Disorder
loc_postc19
24. Post COVID-19 cognitive impairment
loc_postc19if
postc19if primary?
loc_predomsynpres
8a-l. Select the predominant syndrome as present; all others will default to Absent in the NACC database.
loc_ptsddx
15. Post-traumatic stress disorder (PTSD)(DSM-5-TR criteria*)
loc_ptsddxif
ptsddxif primary?
loc_schizoif
schizoif primary?
loc_schizop
13. Schizophrenia or other psychotic disorder (DSM-5-TR criteria*)
loc_syninfbiom
9c. Biomarkers (MRI, PET, CSF, plasma)
loc_syninfclin
9a. Clinical information (history, CDR)
loc_syninfctst
9b. Cognitive testing
loc_tbidx
19. Traumatic brain injury (Distinct from TES and CTE, which are documented as a Clinical Syndrome and Etiologic Diagnosis, respectively)
loc_tbidxif
tbidxif primary?
majdepdif
10a. Major depressive disorder (primary/contributing/non-contributing)
majdepdx
10. Major depressive disorder (DSM-5-TR criteria*)
mbi
7. Does the participant meet criteria for MBI
mci
4b. Does the participant meet criteria for MCI (amnestic or non-amnestic)?
mcicritcln
4a1. MCI criteria - Clinical concern about decline in cognition compared to participant's prior level of lifelong or usual cognitive function
mcicritfun
4a3. MCI criteria - Largely preserved functional independence OR functional dependence that is not related to cognitive decline
mcicritimp
4a2. MCI criteria - Impairment in one or more cognitive domains, compared to participant's estimated prior level of lifelong or usual cognitive function, or supported by objective longitudinal neuropsychological evidence of decline
meds
29. Cognitive impairment due to medications
medsif
29a. Cognitive impairment due to medications (primary/contributing/non-contributing)
msasyn
8k. Multiple system atrophy (MSA) syndrome
msasynt
8k1. If present, select one:
namndem
8g. Non-amnestic multidomain syndrome, not PCA, PPA, bvFTD, or DLB syndrome
ndevdis
16. Developmental neuropsychiatric disorders (e.g., autism spectrum disorder (ASD), attention-deficit hyperactivity disorder (ADHD), dyslexia)
ndevdisif
16a. Developmental neuropsychiatric disorders (e.g., autism spectrum disorder (ASD), attention-deficit hyperactivity disorder (primary/contributing/non-contributing)
neop
22. CNS Neoplasm
neopif
22a. CNS Neoplasm (primary/contributing/non-contributing)
neopstat
22b. CNS Neoplasm - benign or malignant
normcog
2. Does the participant have unimpaired cognition & behavior
ocddx
14d. Obsessive-compulsive disorder (OCD)
othanxd
14e. Other anxiety disorder
othanxdx
14e1. Other anxiety disorder (specify)
othcillif
26a. Cognitive impairment due to other neurologic, genetic, infectious conditions (not listed above), or systemic disease/medical illness (as indicated on Form A5/D2) (primary/contributing/non-contributing)
othcogill
26. Cognitive impairment due to other neurologic, genetic, infectious conditions (not listed above), or systemic disease/medical illness (as indicated on Form A5/D2)
othcogillx
26b. Specify cognitive impairment due to other neurologic, genetic, infection conditions or systemic disease
othdepdif
11a. Other specified depressive disorder (primary/contributing/non-contributing)
othdepdx
11. Other specified depressive disorder (DSM-5-TR criteria*)
othpsy
18. Other psychiatric disorder (DSM-5-TR criteria*)
othpsyif
18a. Other psychiatric disorder (primary/contributing/non-contributing)
othpsyx
18b. Other psychiatric disorder (specify)
othsyn
8l. Other
othsynx
8l1. Other (SPECIFY):
panicdisdx
14c. Panic Disorder
pca
8c. Primary visual presentation (such as posterior cortical atrophy (PCA) syndrome)
postc19
24. Post COVID-19 cognitive impairment
postc19if
24a. Post COVID-19 cognitive impairment (primary/contributing/non-contributing)
ppasyn
8d. Primary progressive aphasia (PPA) syndrome
ppasynt
8d1. If present, select one:
predomsyn
8. Is there a predominant clinical syndrome?
pspsyn
8h. Primary supranuclear palsy (PSP) syndrome
pspsynt
8h1. If present, select one:
ptsddx
15. Post-traumatic stress disorder (PTSD)(DSM-5-TR criteria*)
ptsddxif
15a. Post-traumatic stress disorder (PTSD) (primary/contributing/non-contributing)
scd
2a. Does the participant report 1) significant concerns about changes in cognition AND 2) no neuropsychological evidence of decline AND 3) no functional decline?
scddxconf
2b. As a clinician, are you confident that the subjective cognitive decline is clinically meaningful?
schizoif
13a. Schizophrenia or other psychotic disorder (primary/contributing/non-contributing)
schizop
13. Schizophrenia or other psychotic disorder (DSM-5-TR criteria*)
syninfbiom
9c. Biomarkers (MRI, PET, CSF, plasma)
syninfclin
9a. Clinical information (history, CDR)
syninfctst
9b. Cognitive testing
tbidx
19. Traumatic brain injury (Distinct from TES and CTE, which are documented as a Clinical Syndrome and Etiologic Diagnosis, respectively)
tbidxif
19a. Traumatic brain injury (primary/contributing/non-contributing)
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