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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
11418
Variable Groups

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

Cases: 60
Variables: 1686

Variables

ptid
PTID
adcid
ADCID
visitnum
ADRC Visit Number
packet
Packet Code
formver
Form version number
loc_dssub
Will you complete a Down Syndrome Module with this UDS visit?
visitdate
Visit date Use the date that the UDS visit began (typically A1 form date).
loc_currentyr
Current year
loc_5_yrs_ago
5 years ago
loc_max_birth_yr
Maximum birth year
loc_packet_header
Packet name in header
loc_packet_footer
Packet name in footer
loc_packet_rel_dt
Packet release date
loc_6666_choice_instr
Previous visit choice 6666 instructional text
loc_666_choice_instr
Previous visit choice 666 instructional text
loc_66_choice_instr
Previous visit choice 66 instructional text
loc_777_choice_instr
Previous visit choice 777 instructional text
form_header_complete
Complete?
custom_question
Custom question
custom_instrument_complete
Complete?
frmdatea1
0a. A1 Participant Demographics - Form date
initialsa1
0b. A1 Participant Demographics - Examiner's initials
langa1
0c. A1 Participant Demographics - Language
modea1
0d. A1 Participant Demographics - In-person or remote?
rmreasa1
0d1. If 'A1 Participant Demographics' form was completed remotely, specify reason
rmmodea1
0d1a. What modality was used to collect this remote 'A1 Participant Demographics' form?
admina1
0e. A1 Participant Demographics - Administration:
birthmo
1a. Participant's month of birth
birthyr
1b. Participant's year of birth
chldhdctry
2. In which country or region did you spend most of your childhood?
loc_show_appendix1_1
Show Appendix 1, page 1?
loc_show_appendix1_2
Show Appendix 1, page 2?
loc_raceaian
3a. Race - American Indian or Alaska Native
raceaian
3a. Race - American Indian or Alaska Native
raceaianx
3a1. Race - American Indian or Alaska Native (Specify)
loc_raceasian
3b. Race - Asian
raceasian
3b. Race - Asian
loc_asian
3b. Race - Asian
ethchinese
3b1. Race - Asian - Chinese
ethindia
3b2. Race - Asian - Asian Indian
ethfilip
3b3. Race - Asian - Filipino
ethvietnam
3b4. Race - Asian - Vietnamese
ethkorean
3b5. Race - Asian - Korean
ethjapan
3b6. Race - Asian - Japanese
ethasnoth
3b7. Race - Asian - Other
ethasnothx
3b7a. Race-Asian-Other (Specify)
loc_raceblack
3c. Race - Black or African American
raceblack
3c. Race - Black or African American
loc_black
3c. Race - Black - Countries
ethafamer
3c1. Race - Black or African American - African American
ethjamaica
3c2. Race - Black or African American - Jamaican
ethhaitian
3c3. Race - Black or African American - Haitian
ethnigeria
3c4. Race - Black or African American - Nigerian
ethethiop
3c5. Race - Back or African American - Ethiopian
ethsomali
3c6. Race - Black or African American - Somali
ethblkoth
3c7. Race - Black or African American - Other
ethblkothx
3c7a. Race - Black or African American - Other (Specify)
loc_ethispanic
3d. Race - Hispanic or Latino
ethispanic
3d. Race - Hispanic or Latino
loc_hispanic
3d. Race - Hispanic or Latino
ethmexican
3d1. Race - Hispanic or Latino - Mexican
ethpuerto
3d2. Race - Hispanic or Latino - Puerto Rican
ethsalva
3d3. Race - Hispanic or Latino - Salvadoran
ethcuban
3d4. Race - Hispanic or Latino - Cuban
ethdomin
3d5. Race - Hispanic or Latino - Dominican
ethguatem
3d6. Race - Hispanic or Latino - Guatemalan
ethhisoth
3d7. Race - Hispanic or Latino - Other
ethhisothx
3d7a. Race - Hispanic or Latino - Other (Specify)
loc_racemena
3e. Race - Middle Eastern or North African
racemena
3e. Race - Middle Eastern or North African
loc_mena
3e. Race - Middle Eastern or North African - Countries
ethlebanon
3e1. Race - Middle Eastern or North African - Lebanese
ethiran
3e2. Race - Middle Eastern or North African - Iranian
ethegypt
3e3. Race - Middle Eastern or North African - Egyptian
ethsyria
3e4. Race - Middle Eastern or North African - Syrian
ethiraqi
3e5. Race - Middle Eastern or North African - Iraqi
ethisrael
3e6. Race - Middle Eastern or North African - Israeli
ethmenaoth
3e7. Race - Middle Eastern or North African - Other
ethmenaotx
3e7a. Race-Middle Eastern or North African-Other (Specify)
loc_racenhpi
3f. Race - Native Hawaiian or Pacific Islander
racenhpi
3f. Race - Native Hawaiian or Pacific Islander
loc_nhpi
3f. Race - Native Hawaiian or Pacific Islander
ethhawaii
3f1. Race - Native Hawaiian or Pacific Islander - Native Hawaiian
ethsamoan
3f2. Race - Native Hawaiian or Pacific Islander - Samoan
ethchamor
3f3. Race - Native Hawaiian or Pacific Islander - Chamorro
ethtongan
3f4. Race - Native Hawaiian or Pacific Islander - Tongan
ethfijian
3f5. Race - Native Hawaiian or Pacific Islander - Fijian
ethmarshal
3f6. Race - Native Hawaiian or Pacific Islander - Marshallese
ethnhpioth
3f7. Race - Native Hawaiian or Pacific Islander - Other
ethnhpiotx
3f7a. Race - Native Hawaiian or Pacific Islander - Other (Specify)
loc_racewhite
3g. Race - White
racewhite
3g. Race - White
loc_white
3g1-7. Race - White - Countries
ethenglish
3g1. Race - White - English
ethgerman
3g2. Race - White - German
ethirish
3g3. Race - White - Irish
ethitalian
3g4. Race - White - Italian
ethpolish
3g5. Race - White - Polish
ethscott
3g6. Race - White - Scottish
ethwhioth
3g7. Race - White - Other
ethwhiothx
3g7a. Race - White - Other (specify)
loc_raceunkn
3h. Race - Don't know
raceunkn
3h. Race - Don't know
loc_gender
IVP Q4/FVP Q1. Which term(s) best describes your current gender identity?
genman
IVP Q4a./FVP Q1a. Gender-Man
genwoman
IVP Q4b./FVP Q1b.Gender-Woman
gentrman
IVP Q4c./FVP Q1c. Gender-Transgender man
gentrwoman
IVP Q4d./FVP Q1d. Gender-Transgender woman
gennonbi
IVP Q4e./FVP Q1e. Gender-Non-binary/genderqueer
gentwospir
IVP Q4f./FVP Q1f. Gender-Two-spirit
genoth
IVP Q4g./FVP Q1g. Gender-I use a different term (specify)
genothx
IVP Q4g1./FVP Q1g1. Gender--I use a different term (Specify)
gendkn
IVP Q4h./FVP Q1h. Gender-Don't know
gennoans
IVP Q4i./FVP Q1i. Gender-Prefer not to answer
birthsex
5. What sex were you assigned at birth, on your original birth certificate?
intersex
6. Have you ever been diagnosed by a medical doctor or other health professional with an intersex condition or a "Difference of Sex Development (DSD)" or were you born with (or developed naturally in puberty) genitals, reproductive organs, and/ or chromos
loc_sexorient
IVP Q7./FVP Q2. Which term(s) best describes your sexual orientation?
sexorngay
IVP Q7a./FVP Q2a. Sexual Orientation-Lesbian or Gay
sexornhet
IVP Q7b./FVP Q2b. Sexual Orientation-Straight/Heterosexual
sexornbi
IVP Q7c./FVP Q2c. Sexual Orientation-Bisexual
sexorntwos
IVP Q7d./FVP Q2d. Sexual Orientation-Two-Spirit
sexornoth
IVP Q7e./FVP Q2e. Sexual Orientation-I use a different term
sexornothx
IVP Q7e1./FVP Q2e1. Sexual Orientation--I use a different term (specify, e.g., asexual, queer, questioning)
sexorndnk
IVP Q7f./FVP Q2f. Sexual Orientation-Don't know
sexornnoan
IVP Q7g./FVP Q2g. Sexual Orientation-Prefer not to answer
predomlan
8. What is your primary language? (Primary language is defined as the predominant language you have used throughout your life. Please take into consideration first language learned and used as well as the length of use.)
predomlanx
8a. Participant's primary language-Other (specify)
handed
9. Are you left- or right-handed (for example, which hand would normally be used for writing or throwing a ball)?
educ
10a. How many years of education have you completed?
lvleduc
10b. What is your highest level of education?
maristat
IVP Q11./FVP Q3. What is your current marital status?
livsitua
IVP Q12./FVP Q4 What is your living situation?
residenc
IVP Q13./FVP Q5. What is your primary type of residence?
zip
IVP Q14./FVP Q6. What are the first three digits of the ZIP code of your primary residence? (For example, if your ZIP code is 12345, enter 123)
served
15. Have you ever served on active duty in the U.S. Armed Forces, military Reserves, or National Guard?
medva
IVP Q16./FVP Q7. Have you ever obtained medical care or prescription drugs from a Veterans Affairs (VA) facility?
exrtime
IVP Q17./FVP Q8. How much time in total do you spend each week exercising or engaged in physically strenuous activities that cause increases in your breathing or heart rate for at least 10 minutes continuously? (Include activity at work, traveling to and
memwors
IVP Q18./FVP Q9. Do you feel like your memory is becoming worse?
memtroub
IVP Q19./FVP Q10. About how often do you have trouble remembering things?
memten
IVP Q20./FVP Q11. Compared to 10 years ago, would you say that your memory is much worse, a little worse, the same, a little better, or much better?
adistate
IVP Q21./FVP Q12. ADI state-only decile:
adinat
IVP Q22./FVP Q13. ADI national percentile:
priocc
23. Participant's primary occupation throughout their working life (Select 'show addendum' to see codes)
loc_show_appendix2_1
Show addendum 2, page 1?
loc_show_appendix2_2
Show addendum 2, page 2?
sourcenw
24. ADRC enrollment type:
refersc
25. Principal referral source
referscx
25a. Principle referral source-Other, specify
reflearned
26. If the referral source was a self-referral or a nonprofessional contact, how did the referral source learn of the ADRC?
refctrsocx
26a. Center social media - specify
refctrregx
26b. Center registry - specify
refothwebx
26c. Other website - specify
refothmedx
26d. Other media - specify
refothregx
26e. Other registry - specify
refothx
26f. Other - specify
a1_participant_demographics
_complete
Complete?
frmdatea1a
0a. A1a Social Determinants of Health - Form date
initialsa1a
0b. A1a Social Determinants of Health - Examiner's initials
langa1a
0c. A1a Social Determinants of Health - Language
modea1a
0d. A1a Social Determinants of Health - In-person, remote, or not completed?
rmreasa1a
0d1. If 'A1a Social Determinants of Health' form was completed remotely, specify reason
rmmodea1a
0d1a. What modality was used to collect this remote 'A1a Social Determinants of Health' form?
a1anot
0d2. If 'A1a Social Determinants of Health' form was not completed, specify reason
admina1a
0e. A1a Social Determinants of Health - Administration:
ownscar
1. Do you or someone in your household currently own a car?
trspaccess
2. Do you have consistent access to transportation?
transprob
3. In the past 30 days, how often were you not able to leave the house when you wanted to because of a problem with transportation?
transworry
4. In the past 30 days, how often did you worry about whether or not you would be able to get somewhere because of a problem with transportation?
trspmed
5. In the past 30 days, how often has a lack of transportation kept you from medical appointments or from doing things needed for daily living?
incomeyr
6. Which of these income groups represents your household income for the past year? Include income from all sources such as wages, salaries, social security or retirement benefits, help from relatives, rent from property, and so forth. This information wi
finsatis
7. How satisfied are you with your current personal financial condition?
billpay
8. How difficult is it for you to meet monthly payments on your bills?
finupset
9. If you have had financial problems that lasted twelve months or longer, how upsetting has it been to you?
eatless
10. At any time, did you ever eat less than you felt you should because there wasn't enough money to buy food?
eatlessyr
11. In the last 12 months, did you ever eat less than you felt you should because there wasn't enough money to buy food?
lessmeds
12. At any time, have you ended up taking less medication than was prescribed for you because of the cost?
lessmedsyr
13. In the last 12 months, have you ended up taking less medication than was prescribed for you because of the cost?
compcomm
14. Where would you place yourself on this ladder compared to others in your community (or neighborhood)? Please mark the number where you would place yourself.
guardedu
15. What was your mother's (or primary person who raised you up until age 18) highest level of education completed at the time they were raising you?
emptiness
16. I experience a general sense of emptiness
misspeople
17. I miss having people around
friends
18. I feel like I don't have enough friends
abandoned
19. I often feel abandoned
closefrnd
20. I miss having a really close friend
parentcomm
21. If your parents are still alive, how often do you have contact with them (including mother, father, mother-in-law, and father-in-law) either in person, by phone, mail, or email (e.g., any online interaction)?
childcomm
22. If you have children, how often do you have contact with your children (including child[ren]-in-law and stepchild[ren]) either in person, by phone, mail, or email (e.g., any online interaction)?
friendcomm
23. How often do you have contact with close friends either in person, by phone, mail, or email (e.g., any online interaction)?
participate
24. How often do you participate in activities outside the home (e.g., religious activities, educational activities, volunteer work, paid work, or activities with groups or organizations)?
safehome
25a. Home
safecomm
25b. Community (or neighborhood)
delaymed
26. In the past year, how often did you delay seeking medical attention for a problem that was bothering you?
scriptprob
27. In the past year, how often did you experience challenges in filling a prescription?
missedfup
28. In the past year, how often did you miss a follow-up medical appointment that was scheduled?
docadvice
29. In the past year, how often did you follow a doctor's advice or treatment plan when it was given?
healthacc
30. Overall, which of these describes your health insurance, access to healthcare services, and access to medications?
lesscourt
31. In your day-to-day life how often are you treated with less courtesy or respect than other people?
poorserv
32. In your day-to-day life how often do you receive poorer service than other people at restaurants or stores?
notsmart
33. In your day-to-day life how often do people act as if they think you are not smart?
actafraid
34. In your day-to-day life how often do people act as if they are afraid of you?
threatened
35. In your day-to-day life how often are you threatened or harassed?
poormedtrt
36. How frequently do you receive poorer service or treatment from doctors or in hospitals compared to other people?
loc_exp
37. When reflecting on the day-to-day experiences in questions 31 to 36, what do you think are the main reasons for these experiences?
expancest
37a1. My ancestry or national origins
expgender
37a2. My gender
exprace
37a3. My race
expage
37a4. My age
exprelig
37a5. My religion
expheight
37a6. My height
expweight
37a7. My weight
expappear
37a8. Some other aspect of my physical appearance
expsexorn
37a9. My sexual orientation
expeducinc
37a10. My education or income level
expdisab
37a11. A physical disability
expskin
37a12. My shade of skin color
expother
37a13. Other
expnotapp
37a14. Not applicable - I do not have these experiences in my day-to-day life
expnoans
37a15. Prefer not to answer
expstrs
38. When you have had day-to-day experiences like those in questions 31 to 36, would you say they have been very stressful, moderately stressful, or not stressful?
a1a_sdoh_complete
Complete?
modea2
0d. A2 Co-Participant Demographics - In-person, remote, or not completed?
rmreasa2
0d1. If 'A2 Co-Participant Demographics' form was completed remotely, specify reason
a2not
0d2. If 'A2 Co-Participant Demographics' not submitted, specify reason
rmmodea2
0d1a. What modality was used to collect this remote 'A2 Co-Participant Demographics' form?
frmdatea2
0a. A2 Co-Participant Demographics - Form date
initialsa2
0b. A2 Co-Participant Demographics - Examiner's initials
langa2
0c. A2 Co-Participant Demographics - Language
newinf
1. Is this a new co-participant (i.e., one who was not a co-participant at any past UDS visit)?
inrelto
IVP Q1./FVP Q2. What is the co-participant's relationship to the participant?
inknown
IVP Q2./FVP Q3. How long has the co-participant known the participant? (If the co-participant has known the participant for less than 1 year, use 0.)
inlivwth
IVP Q3./FVP Q4. Does the co-participant live with the participant?
incntmod
IVP Q4./FVP Q5. What is the primary mode of contact with the participant?
incntmdx
Other (SPECIFY):
incntfrq
IVP Q4a1./FVP Q5a1. What is the approximate frequency of all types of contact?
incnttim
IVP Q4a2./FVP Q5a2. What is the average amount of time spent in contact with the participant during each encounter? (Please include an average of all encounter types)
inrely
IVP Q5./FVP Q6. Is there a question about the co-participant's reliability?
inmemwors
IVP Q6./FVP Q7. Do you feel like the participant's memory is becoming worse?
inmemtroub
IVP Q7./FVP Q8. About how often does the participant have trouble remembering things?
inmemten
IVP Q8./FVP Q9. Compared to 10 years ago, would you say that the participant's memory is much worse, a little worse, the same, a little better, or much better?
a2_coparticipant_demographi
cs_complete
Complete?
frmdatea3
0a. A3 Participant Family History - Form date
initialsa3
0b. A3 Participant Family History - Examiner's initials
langa3
0c. A3 Participant Family History - Language
modea3
0d. A3 Participant Family History - In-person or remote?
rmreasa3
0d1. If 'A3 Participant Family History' form was completed remotely, specify reason
rmmodea3
0d1a. What modality was used to collect this remote 'A3 Participant Family History' form?
nwinfpar
1. Since the last UDS visit, is new information available concerning the status of the participant's biological mother or father?
momyob
1a1. Mother -- birth year
momdage
1a2. Mother -- Age at death
mometpr
1a3. Mother -- Primary Dx
mometsec
1a4. Mother - Secondary dx
mommeval
1a5. Mother -- Method of evaluation
momageo
1a6. Mother -- Age of onset of primary dx
dadyob
1b1. Father -- Birth year
daddage
1b2. Father -- Age at death
dadetpr
1b3. Father -- Primary Dx
dadetsec
1b4. Father - Secondary dx
dadmeval
1b5. Father -- Method of evaluation
dadageo
1b6. Father -- Age of onset of primary dx
nwinfsib
2. Since the last UDS visit, is new information available concerning the status of the participant's full siblings?
sibs
2.1. How many full siblings does the participant have? 
sib1yob
2a1. Sibling 1 -- Birth year (YYYY)
sib1agd
2a2. Sibling 1 -- Age at death
sib1etpr
2a3. Sibling 1 -- Primary Dx
sib1etsec
2a4. Sibling 1 - Secondary dx
sib1meval
2a5. Sibling 1 -- Method of evaluation
sib1ago
2a6. Sibling 1 -- Age of onset of primary dx
sib2yob
2b1. Sibling 2 -- Birth year (YYYY)
sib2agd
2b2. Sibling 2 -- Age at death
sib2etpr
2b3. Sibling 2 -- Primary Dx
sib2etsec
2b4. Sibling 2 - Secondary dx
sib2meval
2b5. Sibling 2 -- Method of evaluation
sib2ago
2b6. Sibling 2 -- Age of onset of primary dx
sib3yob
2c1. Sibling 3 -- Birth year (YYYY)
sib3agd
2c2. Sibling 3  -- Age at death
sib3etpr
2c3. Sibling 3 -- Primary Dx
sib3etsec
2c4. Sibling 3 - Secondary dx
sib3meval
2c5. Sibling 3 -- Method of evaluation
sib3ago
2c6. Sibling 3 -- Age of onset of primary dx
sib4yob
2d1. Sibling 4 -- Birth year (YYYY)
sib4agd
2d2. Sibling 4  -- Age at death
sib4etpr
2d3. Sibling 4 -- Primary Dx
sib4etsec
2d4. Sibling 4 - Secondary dx
sib4meval
2d5. Sibling 4 -- Method of evaluation
sib4ago
2d6. Sibling 4 -- Age of onset of primary dx
sib5yob
2e1. Sibling 5 -- Birth year (YYYY)
sib5agd
2e2. Sibling 5  -- Age at death
sib5etpr
2e3. Sibling 5 -- Primary Dx
sib5etsec
2e4. Sibling 5 - Secondary dx
sib5meval
2e5. Sibling 5 -- Method of evaluation
sib5ago
2e6. Sibling 5 -- Age of onset of primary dx
sib6yob
2f1. Sibling 6 -- Birth year (YYYY)
sib6agd
2f2. Sibling 6  -- Age at death
sib6etpr
2f3. Sibling 6 -- Primary Dx
sib6etsec
2f4. Sibling 6 - Secondary dx
sib6meval
2f5. Sibling 6-- Method of evaluation
sib6ago
2f6. Sibling 6 -- Age of onset of primary dx
sib7yob
2g1. Sibling 7 -- Birth year (YYYY)
sib7agd
2g2. Sibling 7  -- Age at death
sib7etpr
2g3. Sibling 7 -- Primary Dx
sib7etsec
2g4. Sibling 7 - Secondary dx
Total: 1686
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