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

11859

Data file: UDSv4TemplateForXMLD_2026-04-14_0731.REDCap.xml

Cases:	60
Variables:	1686

Variables

startyear5

2e3b. Start date (year) (5)

endmo5

2e4a. End date (month) (5)

endyear5

2e4b. End date (year) (5)

caretrial5

2e5. How was the treatment provided? (5)

trialgrp5

2e6. If clinical trial, in which group was the participant? (5)

loc_tgt6

2f1a-2f1e Primary Drug Target

targetab6

2f1a. Primary Drug Target - Amyloid Beta (6)

targettau6

2f1b. Primary Drug Target - Tau (6)

targetinf6

2f1c. Primary Drug Target - Inflammation (6)

targetsyn6

2f1d. Primary Drug Target - Synaptic plasticity/neuroprotection (6)

targetoth6

2f1e. Primary Drug Target - Other target(s) (6)

targetotx6

2f1e1. Primary Drug Target - Other target(s), specify (6)

trttrial6

2f2. Specific treatment and/or trial (6)

nctnum6

2f2b. Specific treatment and/or trial - NCT identifier (6)

startmo6

2f3a. Start date (month) (6)

startyear6

2f3b. Start date (year) (6)

endmo6

2f4a. End date (month) (6)

endyear6

2f4b. End date (year) (6)

caretrial6

2f5. How was the treatment provided? (6)

trialgrp6

2f6. If clinical trial, in which group was the participant? (6)

loc_tgt7

2g1a-2g1e Primary Drug Target

targetab7

2g1a. Primary Drug Target - Amyloid Beta (7)

targettau7

2g1b. Primary Drug Target - Tau (7)

targetinf7

2g1c. Primary Drug Target - Inflammation (7)

targetsyn7

2g1d. Primary Drug Target - Synaptic plasticity/neuroprotection (7)

targetoth7

2g1e. Primary Drug Target - Other target(s) (7)

targetotx7

2g1e1. Primary Drug Target - Other target(s), specify (7)

trttrial7

2g2. Specific treatment and/or trial (7)

nctnum7

2g2b. Specific treatment and/or trial - NCT identifier (7)

startmo7

2g3a. Start date (month) (7)

startyear7

2g3b. Start date (year) (7)

endmo7

2g4a. End date (month) (7)

endyear7

2g4b. End date (year) (7)

caretrial7

2g5. How was the treatment provided? (7)

trialgrp7

2g6. If clinical trial, in which group was the participant? (7)

loc_tgt8

2h1a-2h1e Primary Drug Target

targetab8

2h1a. Primary Drug Target - Amyloid Beta (8)

targettau8

2h1b. Primary Drug Target - Tau (8)

targetinf8

2h1c. Primary Drug Target - Inflammation (8)

targetsyn8

2h1d. Primary Drug Target - Synaptic plasticity/neuroprotection (8)

targetoth8

2h1e. Primary Drug Target - Other target(s) (8)

targetotx8

2h1e1. Primary Drug Target - Other target(s), specify (8)

trttrial8

2h2. Specific treatment and/or trial (8)

nctnum8

2h2b. Specific treatment and/or trial - NCT identifier (8)

startmo8

2h3a. Start date (month) (8)

startyear8

2h3b. Start date (year) (8)

endmo8

2h4a. End date (month) (8)

endyear8

2h4b. End date (year) (8)

caretrial8

2h5. How was the treatment provided? (8)

trialgrp8

2h6. If clinical trial, in which group was the participant? (8)

advevent

3. Has the participant ever experienced amyloid related imaging abnormalities-edema (ARIA-E), amyloid related imaging abnormalities-hemorrhage (ARIA-H), or other major adverse events associated with treatments expected to modify ADRD biomarkers?

newadevent

3a. Since the last UDS visit, is new information available concerning the participant's experience of amyloid related imaging abnormalities-edema (ARIA-E), amyloid related imaging abnormalities-hemorrhage (ARIA-H), or other major adverse events associated

loc_adevent

IVP Q3a./FVP Q3b. What major adverse events associated with treatments expected to modify ADRD biomarkers did they experience? (select all that apply)

ariae

IVP Q3a1./FVP Q3b1. Amyloid related imaging abnormalities-edema (ARIA-E)

ariah

IVP Q3a2./FVP Q3b2. Amyloid related imaging abnormalities-hemorrhage (ARIA-H)

adverseoth

IVP Q3a3./FVP Q3b3. Adverse events to modify ADRD biomarkers - Other

adverseotx

IVP Q3a3a./FVP Q3b3a. Adverse events to modify ADRD biomarkers - Other, specify

a4a_adrd_specific_treatment
s_complete

frmdatea5d2

0a. A5/D2 Participant Health History - Form date

initialsa5d2

0b. A5/D2 Participant Health History - Examiner's initials

langa5d2

0c. A5/D2 Participant Health History - Language

modea5d2

0d. A5/D2 Participant Health History - In-person or remote?

rmreasa5d2

0d1. If 'A5/D2 Participant Health History' form was completed remotely, specify reason

rmmodea5d2

0d1a. What modality was used to collect this remote 'A5/D2 Participant Health History' form?

tobac100

1a. Has participant smoked more than 100 cigarettes in their life

smokyrs

1b. Total years smoked

packsper

1c. Average number of packs smoked per day

tobac30

1d. Has the participant smoked within the last 30 days?

quitsmok

1e. If the participant quit smoking, specify the age at which he/she last smoked (i.e., quit)

alcfreqyr

1f. In the past 12 months, how often has the participant had a drink containing alcohol?

alcdrinks

1g. On a day when the participant drinks alcoholic beverages, how many standard drinks does the participant typically consume? (Standard drink: 12oz of regular beer, 5oz of wine, 1.5oz of distilled spirits)

alcbinge

1h. In the past 12 months, how often did the participant have six or more drinks containing alcohol in one day?

substyear

1i1. Within the past 12 months

substpast

1i2. Prior to 12 months ago

cannabis

1j. In the past 12 months, how often has the participant consumed cannabis (edibles, smoked, or vaporized)?

hrtattack

2a. Heart attack (heart artery blockage) -

hrtattmult

2a1. More than one heart attack?

hrtattage

2a2. Age at most recent heart attack

cardarrest

2b. Cardiac arrest (heart stopped) -

cardarrage

2b1. Age at most recent cardiac arrest

cvafib

2c. Atrial fibrillation

cvangio

2d. Coronary artery angioplasty / endarterectomy / stenting

cvbypass

2e. Coronary artery bypass procedure

bypassage

2e1. Age at most recent surgery

cvpacdef

2f. Pacemaker and/or defibrillator implantation

pacdefage

2f1. Age at first implantation

cvchf

2g. Congestive heart failure (including pulmonary edema)

cvhvalve

2h. Heart valve replacement or repair

valveage

2h1. Age at most recent procedure

cvothr

2i. Other cardiovascular disease:

cvothrx

2i1. Other cardiovascular disease specified:

cbstroke

3a. Stroke -- by history, not exam (imaging is not required)

strokmul

3a1. More than one stroke?

strokage

3a2. Age at most recent stroke:

strokstat

3a3. What is status of stroke symptoms?

angiocp

3a4. Carotid artery surgery or stenting?

carotidage

3a5. Age at most recent carotid artery surgery or stenting

cbtia

3b. Transient ischemic attack (TIA)

tiaage

3b1. Age at most recent TIA

pd

4a. Parkinson's disease (PD)

pdage

4a1. Age at estimated PD symptom onset

pdothr

4b. Other parkinsonism disorder (e.g., DLB)

pdothrage

4b1. Age at parkinsonism disorder diagnosis

seizures

4c. Epilepsy and/or history of seizures (excluding childhood febrile seizures) -

seiznum

4c1. How many seizures has the participant had in the past 12 months?

seizage

4c2. Age at first seizure (excluding childhood febrile seizures)

headache

4d. Chronic headaches

ms

4e. Multiple Sclerosis

hydroceph

4f. Normal-pressure hydrocephalus

headimp

4g. Repetitive head impacts (e.g. from contact sports, intimate partner violence, or military duty), regardless of whether it caused symptoms.

loc_imp

4g1. Indicate the source(s) of exposure for repeated hits to the head (Select all that apply)

impamfoot

4g1a. American Football

impsoccer

imphockey

4g1c. Ice Hockey

impboxing

4g1d. Boxing or mixed martial arts

impsport

4g1e. Other contact sport

impipv

4g1f. Intimate partner violence

impmilit

4g1g. Military service

impassault

4g1h. Physical assault

impother

4g1i. Other (SPECIFY)

impotherx

4g1i1. Specify Other:

impyears

4g2. Indicate the total length of time in years that the participant was exposed to repeated hits to the head (e.g. playing American football for 7 years)

headinjury

4h. Head injury (e.g. in a vehicle accident, being hit by an object, in a fall, while playing sports or biking, in an assault, or during military service) that resulted in a period of feeling "dazed or confused," being unable to recall details of the inju

headinjunc

4h1. After a head injury, what was the longest period of time that the participant was unconscious?

headinjcon

4h2. After a head injury, what was the longest period that the participant was "dazed or confused" or unable to recall details of the injury?

headinjnum

4h3. Total number of head injuries in which the participant felt "dazed or confused", unable to recall details of the injury or experienced loss of consciousness?

firsttbi

4h4. Age of first head injury that resulted in a period of feeling "dazed or confused," being unable to recall details of the injury, or loss of consciousness:

lasttbi

4h5. Age of most recent head injury that resulted in a period of feeling "dazed or confused," being unable to recall details of the injury, or loss of consciousness:

diabetes

diabtype

5a1. Which type?

loc_diab

5a2. Diabetes treated with (Select all that apply)

diabins

5a2a. Diabetes treated with: Insulin

diabmeds

5a2b. Diabetes treated with: Oral medications

diabglp1

5a2c. Diabetes treated with: GLP-1 receptor agonist

diabrecact

5a2d. Diabetes treated with: Other non-insulin, non-GLP-1 receptor agonist injection medication

diabdiet

5a2e. Diabetes treated with: Diet

diabunk

5a2f. Diabetes treated with: Unknown

diabage

5a3. Age at diabetes diagnosis

hyperten

5b. Hypertension (or taking medication for hypertension)

hypertage

5b1. Age at hypertension diagnosis

hypercho

5c. Hypercholesterolemia (or taking medication for high cholesterol)

hyperchage

5c1. Age at hypercholesterolemia diagnosis

b12def

5d. B12 deficiency

thyroid

5e. Thyroid disease

arthrit

loc_arth

5f1. Type of arthritis (Select all that apply)

arthrrheum

5f1a. Type of arthritis: Rheumatoid

arthrosteo

5f1b. Type of arthritis: Osteoarthritis

arthrothr

5f1c. Type of arthritis: Other

arthtypx

5f1c1. Specify other type of arthritis

arthtypunk

5f1d. Type of arthritis: Unknown

loc_arthr

5f2. Region affected by arthritis. (Select all that apply)

arthupex

5f2a. Upper extremity affected by arthritis

arthloex

5f2b. Lower extremity affected by arthritis

arthspin

5f2c. Spine affected by arthritis

arthunk

5f2d. Region affected by arthritis unknown

incontu

5g. Incontinence -- urinary (occurring at least weekly)

incontf

5h. Incontinence -- bowel (occurring at least weekly)

apnea

5i. Sleep apnea

cpap

5i1. Typical use of breathing machine (e.g. CPAP) at night over the past 12 months

apneaoral

5i2. Typical use of an oral device or implanted breathing pacemaker for sleep apnea at night over the past 12 months?

rbd

5j. REM sleep behavior disorder (RBD)

insomn

5k. Hyposomnia/insomnia (occurring at least weekly or requiring medication)

othsleep

5l. Other sleep disorder

othsleex

5l1. Specify other sleep disorder

canceractv

5m. Cancer, primary or metastatic - (Report all known diagnoses. Exclude non-melanoma skin cancer.)

loc_canc

5m1. Type of cancer (select all that apply)

cancerprim

5m1a. Type of cancer: Primary/non-metastatic

loc_5m1b

5m1b. Type of metastatic cancer: (Select all that apply)

cancermeta

5m1b. Type of cancer: Metastatic

cancmetbr

5m1b1. Type of metastatic cancer: Metastatic to brain

cancmetoth

5m1b2. Type of metastatic cancer: Metastatic to sites other than brain

cancerunk

5m1c. Type of cancer: Unknown

loc_cans

5m2. Primary site of cancer

cancblood

5m2a. Primary site of cancer: Blood

cancbreast

5m2b. Primary site of cancer: Breast

canccolon

5m2c. Primary site of cancer: Colon

canclung

5m2d. Primary site of cancer: Lung

cancprost

5m2e. Primary site of cancer: Prostate

cancother

5m2f. Primary site of cancer: Other

cancotherx

5m2f1. Specify other primary site of cancer

loc_canctr

5m3. Type of cancer treatment (Select all that apply)

cancrad

5m3a. Type of cancer treatment: Radiation

cancresect

5m3b. Type of cancer treatment: Surgical resection

cancimmuno

5m3c. Type of cancer treatment: Immunotherapy

cancbone

5m3d. Type of cancer treatment: Bone marrow transplant

cancchemo

5m3e. Type of cancer treatment: Chemotherapy

canchorm

5m3f. Type of cancer treatment: Hormone therapy

canctroth

5m3g. Type of cancer treatment: Other

canctrothx

5m3g1. Specify other type of cancer treatment

cancerage

5m4. Age at most recent cancer diagnosis

covid19

5n. COVID-19 infection

covidhosp

5n1. Requiring hospitalization?

pulmonary

5o. Asthma/COPD/pulmonary disease

kidney

5p. Chronic kidney disease

kidneyage

5p1. Age at diagnosis

liver

5q. Liver disease

liverage

5q1. Age at liver disease diagnosis

pvd

5r. Peripheral vascular disease

pvdage

5r1. Age at diagnosis

hivdiag

5s. Human Immunodeficiency Virus (HIV)

hivage

5s1. Age at HIV diagnosis

othercond

5t. Other medical conditions or procedures

othcondx

5t1. Specify other medical conditions or procedures

majordep

6a1. Major depressive disorder (DSM-5-TR criteria*)

otherdep

6a2. Other specified depressive disorder (DSM-5-TR criteria*)

deprtreat

6a3. Choose if depressive order is treated or untreated.

bipolar

6b. Bipolar disorder (DSM-5-TR criteria)

schiz

6c. Schizophrenia or other psychosis disorder (DSM-5-TR criteria)

anxiety

6d. Anxiety disorder (DSM-5-TR criteria)

generalanx

6d1. Generalized Anxiety Disorder

panicdis

6d2. Panic Disorder

ocd

6d3. Obsessive-compulsive disorder (OCD)

othanxdis

6d4. Other anxiety disorder

othanxdisx

6d4a. Specify other anxiety disorder

ptsd

6e. Post-traumatic stress disorder (PTSD) (DSM-5-TR criteria)

npsydev

6f. Developmental neuropsychiatric disorders (e.g., autism spectrum disorder [ASD], attention-deficit hyperactivity disorder [ADHD], dyslexia)

psycdis

6g. Other psychiatric disorders

psycdisx

6g1. Specify other psychiatric disorders

menarche

7a. How old was the participant when they had their first menstrual period?

nomensage

IVP Q7b./FVP Q7a. How old was the participant when they had their last menstrual period?

loc_nomens

IVP Q7c./FVP Q7b. If the participant has stopped having menstrual periods: Indicate the reason. (Select all that apply)

nomensnat

IVP 7c1./FVP 7b1. Participant has stopped having menstrual periods due to natural menopause

nomenshyst

IVP 7c2./FVP 7b2. Participant has stopped having menstrual periods due to hysterectomy (surgical removal of uterus)

nomenssurg

IVP 7c3./FVP 7b3. Participant has stopped having menstrual periods due to surgical removal of both ovaries

nomenschem

IVP 7c4./FVP 7b4. Participant has stopped having menstrual periods due to chemotherapy for cancer or another condition

nomensrad

IVP 7c5./FVP 7b5. Participant has stopped having menstrual periods due to radiation treatment or other damage/injury to reproductive organs

nomenshorm

IVP 7c6./FVP 7b6. Participant has stopped having menstrual periods due to hormonal supplements (e.g. the Pill, injections, Mirena, HRT)

nomensestr

IVP 7c7./FVP 7b7. Participant has stopped having menstrual periods due to Anti-estrogen medication such as Tamoxifen, anostrozole (Arimidex). exemestane (Aromasin), or letrozole (Femara)

nomensunk

IVP 7c8./FVP 7b8. Unsure of reason participant has stopped having menstrual periods

nomensoth

7c9./FVP 7b9. Other reason participant has stopped having menstrual periods

nomensothx

7c9a. Specify other reason participant has stopped having menstrual periods

hrt

IVP Q7d./FVP Q7c. Has the participant taken female hormone replacement pills or patches (e.g. estrogen)?

hrtyears

IVP Q7d1./FVP Q7c1. Total number of years participant has taken female hormone replacement pills

hrtstrtage

IVP Q7d2./FVP Q7c2. Age at first use

hrtendage

IVP Q7d3./FVP Q7c3. Age at last use

bcpills

IVP Q7e./FVP Q7d. Has the participant ever taken birth control pills?

bcpillsyr

IVP Q7e1./FVP Q7d1. How many years in total?

bcstartage

IVP Q7e2./FVP Q7d2. Age at first use

bcendage

IVP Q7e3./FVP Q7d3. Age at last use

a5d2_participant_health_his
tory_clinician_assessed_com
plete

modeb1

0d. B1 Evaluation Form: Physical - In-person or not completed?

b1not

0d1. If 'B1 Evaluation Form: Physical' not submitted, specify reason

frmdateb1

0a. B1 Evaluation Form: Physical - Form date

initialsb1

0b. B1 Evaluation Form: Physical - Examiner's initials

langb1

0c. B1 Evaluation Form: Physical - Language

height

1. Participant height (inches)

weight

2. Participant weight (lbs.)

waist1

3a. Waist circumference measurements (inches): Measurement 1

waist2

3b. Waist circumference measurements (inches): Measurement 2

hip1

4a. Hip circumference measurements (inches): Measurement 1

hip2

4b. Hip circumference measurements (inches): Measurement 2

bpsysl1

5a1a. Participant blood pressure - Left arm: Systolic Reading 1

bpdiasl1

5a1b. Participant blood pressure - Left arm: Diastolic Reading 1

bpsysl2

5a2a. Participant blood pressure - Left arm: Systolic Reading 2

bpdiasl2

5a2b. Participant blood pressure - Left arm: Diastolic Reading 2

bpsysr1

5b1a. Participant blood pressure - Right arm: Systolic Reading 1

bpdiasr1

5b1b. Participant blood pressure - Right arm: Diastolic Reading 1

bpsysr2

5b2a. Participant blood pressure - Right arm: Systolic Reading 2

bpdiasr2

5b2b. Participant blood pressure - Right arm: Diastolic Reading 2

hrate

6. Participant resting heart rate (pulse)

b1_vital_signs_and_anthropo
metrics_complete

modeb3

0d. B3 UPDRS-Parkinson's - In-person or not completed?

b3not

0d1. If 'B3 UPDRS-Parkinson's' not submitted, specify reason

frmdateb3

0a. B3 UPDRS-Parkinson's - Form date

initialsb3

0b. B3 UPDRS-Parkinson's - Examiner's initials

langb3

0c. B3 UPDRS-Parkinson's - Language

pdnormal

UPDRS is normal

loc_pdnormal_lastvis_calc

If pdnormal is selected in a previous visit, then 'UPDRS is normal', else 'not selected'

speech

speechx

1a. Speech untestable (specify)

facexp

2. Facial expression

facexpx

2a. Facial expression untestable (specify)

trestfac

3a. Tremor at rest - face, lips, chin

trestfax

3a1. Tremor at rest - face, lips, chin untestable (specify)

trestrhd

3b. Tremor at rest - right hand

trestrhx

3b1. Tremor at rest - right hand untestable (specify)

trestlhd

3c. Tremor at rest - left hand

trestlhx

3c1. Tremor at rest - left hand untestable (specify)

trestrft

3d. Tremor at rest - right foot

trestrfx

3d1. Tremor at rest - right foot untestable (specify)

trestlft

3e. Tremor at rest - left foot

trestlfx

3e1. Tremor at rest - left foot untestable (specify)

tractrhd

4a. Action or postural tremor of hands - right hand

tractrhx

4a1. Action or postural tremor of hands - right hand untestable (specify)

tractlhd

4b. Action or postural tremor of hands - left hand

tractlhx

4b1. Action or postural tremor of hands - left hand untestable (specify)

rigdneck

5a. Rigidity - neck

rigdnex

5a1. Rigidity - neck untestable (specify)

rigduprt

5b. Rigidity - right upper extremity

rigduprx

5b1. Rigidity - right upper extremity untestable (specify)

rigduplf

5c. Rigidity - left upper extremity

rigduplx

5c1. Rigidity - left upper extremity untestable (specify)

rigdlort

5d. Rigidity - right lower extremity

rigdlorx

5d1. Rigidity - right lower extremity untestable (specify)

rigdlolf

5e. Rigidity - left lower extremity

rigdlolx

5e1. Rigidity - left lower extremity untestable (specify)

tapsrt

6a. Finger taps - right hand

tapsrtx

6a1. Finger taps - right hand untestable (specify)

tapslf

6b. Finger taps - left hand

Total: 1686

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