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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
11409
  • 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: D1b Etiological Diagnosis and Biomarker Support
Variables 120
alzdis
12. Alzheimer's disease
alzdisif
12a. Alzheimer's disease (Primary, contributing, or non-contributing)
amylpet
6a1. Elevated amyloid
autdommut
11. Is there an autosomal dominant pathogenic variant to support an etiological diagnosis? {loc_autdommut_lastvis}
biomad1
8a. Consistent with AD
biomad2
9a. Consistent with AD
biomad3
10a. Consistent with AD
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)
biomftld1
8b. Consistent with FTLD
biomftld2
9b. Consistent with FTLD
biomftld3
10b. Consistent with FTLD
biomlbd1
8c. Consistent with LBD
biomlbd2
9c. Consistent with LBD
biomlbd3
10c. Consistent with LBD
biomoth1
8d. Consistent with other etiology
biomoth2
9d. Consistent with other etiology
biomoth3
10d. Consistent with other etiology
biomothx1
8d1. Consistent with other etiology (SPECIFY)
biomothx2
9d1. Consistent with other etiology (SPECIFY):
biomothx3
10d1. Consistent with other etiology (SPECIFY):
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):
caa
21. Cerebral amyloid angiopathy
caaif
21a.  Cerebral amyloid angiopathy (Primary, contributing, or non-contributing)
cort
14b. Corticobasal degeneration (CBD)
cortif
14b1. Corticobasal degeneration (CBD) (Primary, contributing, or non-contributing)
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):
cte
17. Chronic traumatic encephalopathy
ctecert
17b. If CTE is present, specify certainty:
cteif
17a.  Chronic traumatic encephalopathy (Primary, contributing, or non-contributing)
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)
datscandx
6c. Dopamine Transporter (DAT) Scan - Was DAT Scan data or information used to support an etiological diagnosis?
downs
18. Down syndrome
downsif
18a.  Down syndrome (Primary, contributing, or non-contributing)
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)
fdgpetdx
6b. FDG PET - Was FDG PET data or information used to support an etiological diagnosis?
fluidbiom
2. Fluid Biomarkers - Were fluid biomarkers used for assessing the etiological diagnosis?
frmdated1b
0a. D1b Biomarker and Etiological Diagnosis - Form date
ftld
14. Frontotemporal lobar degeneration (FTLD)
ftldmo
14c. FTLD with motor neuron disease
ftldmoif
14c1. FTLD with motor neuron disease (Primary, contributing, or non-contributing)
ftldnoif
14d1. FTLD not otherwise specified (NOS) (Primary, contributing, or non-contributing)
ftldnos
14d. FTLD not otherwise specified (NOS)
ftldsubt
14c. FTLD subtype
ftldsubx
14c1. Other FTLD subtype (specify)
hunt
19. Huntington's disease
huntif
19a.  Huntington's disease (Primary, contributing, or non-contributing)
imagingdx
5. Imaging - Was imaging used for assessing etiological diagnosis?
imaglac
7a3b. Lacunar infarct(s)
imaglinf
7a3a. Large vessel infarct(s)
imagmach
7a3c. Macrohemorrhage(s)
imagmich
7a3d. Microhemorrhage(s)
imagwmh
7a3e. White matter hyperintensity
imagwmhsev
7a3e1. White-matter hyperintensity severity
initialsd1b
0b. D1b Biomarker and Etiological Diagnosis - Examiner's initials
langd1b
0c. D1b Biomarker and Etiological Diagnosis - Language
late
22. LATE: Limbic-predominant age-related TDP-43 encephalopathy
lateif
22a.  LATE (Primary, contributing, or non-contributing)
lbdif
13a. Lewy body disease (Primary, contributing, or non-contributing)
lbdis
13. Lewy body disease
loc_alzdisif
alzdisif primary?
loc_caaif
caaif primary?
loc_cortif
cortif primary?
loc_cteif
cteif primary
loc_cvdif
cvdif primary?
loc_d1b_diagall
Sum of D1b Diagnoses 12-23 marked as primary
loc_d1b_diagset1
Sum of D1b Diagnoses 12-13 marked as primary
loc_d1b_diagset2
Sum of D1b Diagnoses 14 marked as primary
loc_d1b_diagset3
Sum of D1a Diagnoses 15-17 marked as primary
loc_d1b_diagset4
Sum of D1b Diagnoses 18-23 marked as primary
loc_downsif
downsif primary?
loc_ftldmoif
ftldmoif primary?
loc_ftldnoif
ftldnoif primary?
loc_huntif
huntif primary?
loc_lateif
lateif primary?
loc_lbdif
lbdif primary?
loc_msaif
msaif primary
loc_othcogif
othcogif primary?
loc_prionif
prionif primary?
loc_pspif
pspif primary?
msa
16. Multiple system atrophy
msaif
16a. Multiple system atrophy (Primary, contributing, or non-contributing)
othbiom1
8. Other biomarker modality - Was another biomarker modality used to support an etiological diagnosis?
othbiom2
9. Other biomarker modality - Was another biomarker modality used to support an etiological diagnosis? 
othbiom3
10. 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)
othbiomx2
9a1. Was another biomarker modality used to support an etiological diagnosis? (SPECIFY):
othbiomx3
10a1. Was another biomarker modality used to support an etiological diagnosis? (SPECIFY):
othcog
23. Other Etiological diagnosis
othcogif
23a.  Other Etiological diagnosis (Primary, contributing, or non-contributing)
othcogx
23b. Other Etiological diagnosis - specify
petdx
6a. Tracer-based PET - Were tracer-based PET measures used in assessing an etiological diagnosis?
prion
20. Prion disease (CJD, other)
prionif
20a.  Prion disease (CJD, other) (Primary, contributing, or non-contributing)
psp
14a. Primary supranuclear palsy (PSP)
pspif
14a1. Primary supranuclear palsy (PSP) (Primary, contributing, or non-contributing)
structad
7a1. Atrophy pattern conistent with AD
structcvd
7a3. Consistent with cerebrovascular disease (CVD)
structdx
7a. Structural Imaging (i.e., MRI or CT) - Was structural imaging data or information used to support an etiological diagnosis?
structftld
7a2. Atrophy pattern consistent with FTLD
taupet
6a2. Elevated tau pathology
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)
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)
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