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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
11910
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
Data file: UDSv4TemplateForXMLD_2026-04-14_0731.REDCap.xml
Cases:
60
Variables:
1686
Variables
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)
loc_tbidxif
tbidxif primary?
loc_epilep
20. Epilepsy
epilep
20. Epilepsy
epilepif
20a. Epilepsy (primary/contributing/non-contributing)
loc_epilepif
epilepif primary?
loc_hyceph
21. Normal-pressure hydrocephalus
hyceph
21. Normal-pressure hydrocephalus
hycephif
21a. Normal-pressure hydrocephalus (primary/contributing/non-contributing)
loc_hycephif
hycephif primary?
loc_neop
22. CNS Neoplasm
neop
22. CNS Neoplasm
neopif
22a. CNS Neoplasm (primary/contributing/non-contributing)
loc_neopif
neopif primary?
loc_d1a_condset3
Sum of D1a Conditions 19-22 marked as primary
neopstat
22b. CNS Neoplasm - benign or malignant
loc_hiv
23. Human immunodeficiency virus (HIV) infection
hiv
23. Human immunodeficiency virus (HIV) infection
hivif
23a. Human Immunodeficiency Virus (HIV) infection (primary/contributing/non-contributing)
loc_hivif
hivif primary?
loc_postc19
24. Post COVID-19 cognitive impairment
postc19
24. Post COVID-19 cognitive impairment
postc19if
24a. Post COVID-19 cognitive impairment (primary/contributing/non-contributing)
loc_postc19if
postc19if primary?
loc_apneadx
25. Sleep apnea (i.e., obstructive, central, mixed or complex sleep apnea)
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)
loc_apneadxif
apneadxif 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)
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)
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)
loc_othcillif
othcillif primary?
loc_d1a_condset4
Sum of D1a Conditions 23-26 marked as primary
othcogillx
26b. Specify cognitive impairment due to other neurologic, genetic, infection conditions or systemic disease
loc_alcdem
27. Cognitive impairment due to alcohol use or abuse
alcdem
27. Cognitive impairment due to alcohol use or abuse
alcdemif
27a. Cognitive impairment due to alcohol abuse (primary/contributing/non-contributing)
loc_alcdemif
alcdemif primary?
loc_impsub
28. Cognitive impairment due to substance use or abuse
impsub
28. Cognitive impairment due to substance use or abuse
impsubif
28a. Cognitive impairment due to substance use or abuse (primary/contributing/non-contributing)
loc_impsubif
impsubif primary?
loc_meds
29. Cognitive impairment due to medications
meds
29. Cognitive impairment due to medications
medsif
29a. Cognitive impairment due to medications (primary/contributing/non-contributing)
loc_medsif
medsif primary?
loc_cogoth
30. Cognitive impairment not otherwise specified (NOS)
cogoth
30. Cognitive impairment not otherwise specified (NOS)
cogothif
30a. Cognitive impairment NOS (primary/contributing/non-contributing)
loc_cogothif
cogothif primary?
cogothx
30b. Cognitive impairment NOS (specify)
loc_cogoth2
31. Cognitive impairment not otherwise specified (NOS)
cogoth2
31. Cognitive impairment not otherwise specified (NOS)
cogoth2f
31a. Cognitive impairment NOS (primary/contributing/non-contributing)
loc_cogoth2f
cogoth2f primary?
cogoth2x
31b. Cognitive impairment NOS (specify)
loc_cogoth3
32. Cognitive impairment not otherwise specified (NOS)
cogoth3
32. Cognitive impairment not otherwise specified (NOS)
cogoth3f
32a. Cognitive impairment NOS (primary/contributing/non-contributing)
loc_cogoth3f
cogoth3f primary?
loc_d1a_condset5
Sum of D1a Conditions 27-32 marked as primary
cogoth3x
32b. Cognitive impairment NOS (specify)
loc_d1a_condall
Sum of D1a Diagnoses 10-32 marked as primary
d1a_clinical_syndrome_compl
ete
Complete?
frmdated1b
0a. D1b Biomarker and Etiological Diagnosis - Form date
initialsd1b
0b. D1b Biomarker and Etiological Diagnosis - Examiner's initials
langd1b
0c. D1b Biomarker and Etiological Diagnosis - Language
biomarkdx
1. Were any biomarker results used to support the current etiological diagnosis? (Consider any biomarker results from any time that may be clinically relevant)
fluidbiom
2. Fluid Biomarkers - Were fluid biomarkers used for assessing the etiological diagnosis?
bloodad
3a. Consistent with AD
bloodftld
3b. Consistent with FTLD
bloodlbd
3c. Consistent with LBD
bloodoth
3d. Consistent with other etiology (SPECIFY): {bloodothx}
bloodothx
3d1. Consistent with other etiology (SPECIFY):
csfad
4a. Consistent with AD
csfftld
4b. Consistent with FTLD
csflbd
4c. Consistent with LBD
csfoth
4d. Consistent with other etiology (SPECIFY): {csfothx}
csfothx
4d1. Consistent with other etiology (SPECIFY):
imagingdx
5. Imaging - Was imaging used for assessing etiological diagnosis?
petdx
6a. Tracer-based PET - Were tracer-based PET measures used in assessing an etiological diagnosis?
amylpet
6a1. Elevated amyloid
taupet
6a2. Elevated tau pathology
fdgpetdx
6b. FDG PET - Was FDG PET data or information used to support an etiological diagnosis?
fdgad
6b1. Consistent with AD
fdgftld
6b2. Consistent with FTLD
fdglbd
6b3. FDG PET - Consistent with LBD
fdgoth
6b4. Consistent with other etiology (SPECIFY):{fdgothx}
fdgothx
6b4a. FDG PET - Consistent with other etiology (specify)
datscandx
6c. Dopamine Transporter (DAT) Scan - Was DAT Scan data or information used to support an etiological diagnosis?
tracothdx
6d. Other tracer-based imaging - Were other tracer-based imaging used to support an etiological diagnosis? (SPECIFY): {tracothdxx}
tracothdxx
6d1a. Were other tracer-based imaging used to support an etiological diagnosis? (specify)
tracerad
6d1. Consistent with AD
tracerftld
6d2. Consistent with FTLD
tracerlbd
6d3. Consistent with LBD
traceroth
6d4. Consistent with other etiology (SPECIFY):
tracerothx
6d4a. Consistent with other etiology (specify)
structdx
7a. Structural Imaging (i.e., MRI or CT) - Was structural imaging data or information used to support an etiological diagnosis?
structad
7a1. Atrophy pattern conistent with AD
structftld
7a2. Atrophy pattern consistent with FTLD
structcvd
7a3. Consistent with cerebrovascular disease (CVD)
imaglinf
7a3a. Large vessel infarct(s)
imaglac
7a3b. Lacunar infarct(s)
imagmach
7a3c. Macrohemorrhage(s)
imagmich
7a3d. Microhemorrhage(s)
imagwmh
7a3e. White matter hyperintensity
imagwmhsev
7a3e1. White-matter hyperintensity severity
othbiom1
8. Other biomarker modality - Was another biomarker modality used to support an etiological diagnosis?
othbiomx1
8a1. Other biomarker modality - Was another biomarker modality used to support an etiological diagnosis? (specify)
biomad1
8a. Consistent with AD
biomftld1
8b. Consistent with FTLD
biomlbd1
8c. Consistent with LBD
biomoth1
8d. Consistent with other etiology
biomothx1
8d1. Consistent with other etiology (SPECIFY)
othbiom2
9. Other biomarker modality - Was another biomarker modality used to support an etiological diagnosis?
othbiomx2
9a1. Was another biomarker modality used to support an etiological diagnosis? (SPECIFY):
biomad2
9a. Consistent with AD
biomftld2
9b. Consistent with FTLD
biomlbd2
9c. Consistent with LBD
biomoth2
9d. Consistent with other etiology
biomothx2
9d1. Consistent with other etiology (SPECIFY):
othbiom3
10. Other biomarker modality - Was another biomarker modality used to support an etiological diagnosis?
othbiomx3
10a1. Was another biomarker modality used to support an etiological diagnosis? (SPECIFY):
biomad3
10a. Consistent with AD
biomftld3
10b. Consistent with FTLD
biomlbd3
10c. Consistent with LBD
biomoth3
10d. Consistent with other etiology
biomothx3
10d1. Consistent with other etiology (SPECIFY):
autdommut
11. Is there an autosomal dominant pathogenic variant to support an etiological diagnosis? {loc_autdommut_lastvis}
alzdis
12. Alzheimer's disease
alzdisif
12a. Alzheimer's disease (Primary, contributing, or non-contributing)
loc_alzdisif
alzdisif primary?
lbdis
13. Lewy body disease
lbdif
13a. Lewy body disease (Primary, contributing, or non-contributing)
loc_lbdif
lbdif primary?
ftld
14. Frontotemporal lobar degeneration (FTLD)
loc_d1b_diagset1
Sum of D1b Diagnoses 12-13 marked as primary
psp
14a. Primary supranuclear palsy (PSP)
pspif
14a1. Primary supranuclear palsy (PSP) (Primary, contributing, or non-contributing)
loc_pspif
pspif primary?
cort
14b. Corticobasal degeneration (CBD)
cortif
14b1. Corticobasal degeneration (CBD) (Primary, contributing, or non-contributing)
loc_cortif
cortif primary?
ftldmo
14c. FTLD with motor neuron disease
ftldmoif
14c1. FTLD with motor neuron disease (Primary, contributing, or non-contributing)
loc_ftldmoif
ftldmoif primary?
ftldnos
14d. FTLD not otherwise specified (NOS)
ftldnoif
14d1. FTLD not otherwise specified (NOS) (Primary, contributing, or non-contributing)
loc_ftldnoif
ftldnoif primary?
loc_d1b_diagset2
Sum of D1b Diagnoses 14 marked as primary
ftldsubt
14c. FTLD subtype
ftldsubx
14c1. Other FTLD subtype (specify)
cvd
15. Vascular brain injury (based on clinical and imaging evidence according to your Center's standards)
cvdif
15a. Vascular brain injury (Primary, contributing, or non-contributing)
loc_cvdif
cvdif primary?
msa
16. Multiple system atrophy
msaif
16a. Multiple system atrophy (Primary, contributing, or non-contributing)
loc_msaif
msaif primary
cte
17. Chronic traumatic encephalopathy
cteif
17a. Chronic traumatic encephalopathy (Primary, contributing, or non-contributing)
loc_cteif
cteif primary
ctecert
17b. If CTE is present, specify certainty:
loc_d1b_diagset3
Sum of D1a Diagnoses 15-17 marked as primary
downs
18. Down syndrome
downsif
18a. Down syndrome (Primary, contributing, or non-contributing)
loc_downsif
downsif primary?
hunt
19. Huntington's disease
huntif
19a. Huntington's disease (Primary, contributing, or non-contributing)
loc_huntif
huntif primary?
prion
20. Prion disease (CJD, other)
prionif
20a. Prion disease (CJD, other) (Primary, contributing, or non-contributing)
loc_prionif
prionif primary?
caa
21. Cerebral amyloid angiopathy
caaif
21a. Cerebral amyloid angiopathy (Primary, contributing, or non-contributing)
loc_caaif
caaif primary?
late
22. LATE: Limbic-predominant age-related TDP-43 encephalopathy
lateif
22a. LATE (Primary, contributing, or non-contributing)
loc_lateif
lateif primary?
othcog
23. Other Etiological diagnosis
othcogif
23a. Other Etiological diagnosis (Primary, contributing, or non-contributing)
loc_othcogif
othcogif primary?
othcogx
23b. Other Etiological diagnosis - specify
loc_d1b_diagset4
Sum of D1b Diagnoses 18-23 marked as primary
loc_d1b_diagall
Sum of D1b Diagnoses 12-23 marked as primary
d1b_etiological_diagnosis_a
nd_biomarker_support_comple
te
Complete?
Total: 1686
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