NACC Uniform Data Set (UDS) DATA ELEMENT DICTIONARY for Telephone Follow-up Packet (TFP)

Transcription

1 Department of Epidemiology, School of Public Health, University of Washington th Avenue NE #300 Seattle, WA phone: (206) ; fax: (206) website: NACC Uniform Data Set (UDS) DATA ELEMENT DICTIONARY for Telephone Follow-up Packet (TFP) (.0, February 2008) NOTE: is NOT the most current version of the UDS forms and is no longer used for data submission. For the most current version, please visit This DED last modified June 9, Copyright 2006, 2008 University of Washington This publication was funded by the National Institutes of Health through the National Institute on Aging (Cooperative Agreement #AG016976)

2 Data Element Dictionary NACC UDS Telephone Follow-up Visit Packet (TFP) GLOSSARY OF TERMS : Indicates order of appearance on the UDS form. : For non-fixed-format files, variable name must match exactly. Version: 2 : Used on the web page to indicate variable. Question: The question as it appears on the UDS form. Length of Field: For fixed field formats, number of columns for this variable. Column Positions: For fixed field formats, column numbers for this variable. : For non-fixed field formats, variable type as numerical or character. : List of codes with mapping instructions. and Skips: Instructions for skip patterns. Comments: Other instructions as needed. (version 2.0, February 2008) i

3 Form Header (all Telephone Follow-up Packet forms) 0A PACKET Packet code Length of Field 2 Column Positions 1 2 Character T = Telephone Follow-up Packet 0B FORMID Form ID Length of Field 3 Column Positions 4 6 Character A1 A5 B4 B5 or B5S B7 or B7S B9 D1 E1 T1 Z1 0C FORMVER Form version number Length of Field 3 Column Positions 8 10 See bottom of current form, use integer portion of version number. Comment For example, version 2.0 is FORMVER = 2. NACC UDS Data Element Dictionary TFP (version 2.0, February 2008) Form Header: page 1

4 Length of Field 2 Form Header (all Telephone Follow-up Packet forms) 0D ADCID Center ID Column Positions , Use code below as your Center ID: 2 = Boston U 3 = Case Western 4 = Columbia 5 = Duke 6 = Emory 7 = Massachusetts ADRC 8 = Indiana U 9 = Johns Hopkins 10 = Mayo 11 = Mount Sinai 12 = New York U 13 = Northwestern 14 = Oregon Health & Science U 15 = Rush U 16 = U California, Davis 17 = U California, Los Angeles 18 = U California, San Diego 19 = U Kentucky 20 = U Michigan 21 = U Pennsylvania 22 = U Pittsburgh 25 = U Texas Southwestern 26 = U Washington 27 = Washington U, Saint Louis 28 = U Alabama 30 = U Southern California 31 = U California, Irvine 32 = Stanford 33 = Arizona ADC 34 = U Arkansas 35 = U California, San Francisco 36 = Florida ADC 37 = U Wisconsin 38 = U Kansas Note: ADCID is replaced by a randomly generated NACCADC in research data sets generated by NACC. NACC UDS Data Element Dictionary TFP (version 2.0, February 2008) Form Header: page 2

5 Form Header (all Telephone Follow-up Packet forms) 0E 0 PTID Column Positions Comment ADC Subject ID ADC Subject ID Character Follow your Center s Patient ID scheme; use same ID as in MDS, if enrolled in MDS. Number must be unique within data from your Center, and be used for each visit for subject. Note: PTID is replaced by a randomly generated NACCID in research data sets generated by NACC. 0F VISITMO Form Date month Form Date Length of Field 2 Column Positions Comment Form date cannot precede September 1, G VISITDAY Version 1 Form Date day Form Date Length of Field 2 Column Positions Comment Form date cannot precede September 1, NACC UDS Data Element Dictionary TFP (version 2.0, February 2008) Form Header: page 3

6 Form Header (all Telephone Follow-up Packet forms) 0H VISITYR Form Date year Form Date Column Positions to present year Comment Visit date cannot precede September 1, I VISITNUM ADC Visit ID ADC Visit # Length of Field 3 Column Positions Comment Character Can be determined by the Center. The Center can use its existing visit number scheme, if desired. It is NOT required to start with 1. 0J INITIALS Examiner s initials Examiner s initials Length of Field 3 Column Positions Character Any text or numbers but cannot use single quotes ( ), double quotes ( ), ampersands (&) or percentage signs (%). Note: INITIALS is never released in research data sets generated by NACC. NACC UDS Data Element Dictionary TFP (version 2.0, February 2008) Form Header: page 4

7 1 Column Positions 45 Length of Field 2 Telephone Follow-up Form Z1: Form Checklist A3SUB Form A3 submitted Form A3, Subject Family History submitted 0 = No 1A A3NOT Column Positions Reason Form A3 not submitted Reason Form A3, Subject Family History not submitted 95 = Physical problem 96 = Cognitive/behavior problem 97 = Other problem 98 = Verbal refusal Blank if #2, A3SUB = 1 (Yes). 1B Length of Field 60 A3COMM Column Positions Form A3 comments Form A3, Subject Family History, comments (provide if needed) Character Any text or numbers but cannot use single quotes ( ), double quotes ( ), ampersands (&), or percentage signs (%). NACC UDS Data Element Dictionary TFP (version 2.0, February 2008) Form Z1: page 5

8 2 Column Positions 111 Length of Field 2 Telephone Follow-up Form Z1: Form Checklist A4SUB Form A4 submitted Form A4, Subject Medications submitted 0 = No 2A A4NOT Column Positions Reason Form A4 not submitted Reason Form A4, Subject Medications not submitted 95 = Physical problem 96 = Cognitive/behavior problem 97 = Other problem 98 = Verbal refusal Blank if #3, A4SUB = 1 (Yes). 2B Length of Field 60 A4COMM Form A4 comments Column Positions Form A4, Subject Medications, comments (provide if needed) Character Any text or numbers but cannot use single quotes ( ), double quotes ( ), ampersands (&), or percentage signs (%). NACC UDS Data Element Dictionary TFP (version 2.0, February 2008) Form Z1: page 6

9 3 Column Positions 177 Length of Field 2 Telephone Follow-up Form Z1: Form Checklist B5SUB Form B5 or B5S submitted Form B5 or B5S, Behavioral Assessment NPI-Q submitted 0 = No 3A B5NOT Column Positions Reason Form B5 or B5S not submitted Reason Form B5 or B5S, Behavioral Assessment NPI-Q not submitted 95 = Physical problem 96 = Cognitive/behavior problem 97 = Other problem 98 = Verbal refusal Blank if #7, B5SUB = 1 (Yes). 3B B5COMM Form B5 or B5S comments Form B5 or B5S, Behavioral Assessment NPI-Q, comments (provide if needed) Length of Field 60 Column Positions Character Any text or numbers but cannot use single quotes ( ), double quotes ( ), ampersands (&), or percentage signs (%). NACC UDS Data Element Dictionary TFP (version 2.0, February 2008) Form Z1: page 7

10 4 Column Positions 243 Length of Field 2 Telephone Follow-up Form Z1: Form Checklist B7SUB Form B7 or B7S submitted Form B7 or B7S, Functional Assessment FAQ submitted 0 = No 4A B7NOT Column Positions Reason Form B7 or B7S not submitted Reason Form B7 or B7S, Functional Assessment FAQ not submitted 95 = Physical problem 96 = Cognitive/behavior problem 97 = Other problem 98 = Verbal refusal Blank if #9, B7SUB = 1 (Yes). 4B B7COMM Form B7 or B7S comments Form B7 or B7S, Functional Assessment FAQ, comments (provide if needed) Length of Field 60 Column Positions Character Any text or numbers but cannot use single quotes ( ), double quotes ( ), ampersands (&), or percentage signs (%). NACC UDS Data Element Dictionary TFP (version 2.0, February 2008) Form Z1: page 8

11 Telephone Follow-up Form T1: Inclusion Form 1A TELCOG Too cognitively impaired Why is the UDS telephone follow-up protocol being used to obtain data about the subject? Too cognitively impaired for in-person UDS visit. Column Positions 45 0 = No 1B TELILL Too physically impaired Why is the UDS telephone follow-up protocol being used to obtain data about the subject? Too physically impaired (medical illness or injury) to attend in-person UDS visit. Column Positions 47 0 = No 1C TELHOME Cannot travel Why is the UDS telephone follow-up protocol being used to obtain data about the subject? Homebound or in nursing home and cannot travel. Column Positions 49 0 = No NACC UDS Data Element Dictionary TFP (version 2.0, February 2008) Form T1: page 9

12 Telephone Follow-up Form T1: Inclusion Form 1D TELREFU Refused visit Why is the UDS telephone follow-up protocol being used to obtain data about the subject? Subject or informant refused in-person UDS visit. Column Positions 51 0 = No 1E TELOTHR Other reason Why is the UDS telephone follow-up protocol being used to obtain data about the subject? Other reason. Column Positions 53 0 = No 1E1 TELOTHRX Other reason (specify) Why is the UDS telephone follow-up protocol being used to obtain data about the subject? Other reason (specify). Length of Field 60 Column Positions Character Any text or numbers but cannot use single quotes ( ), double quotes ( ), ampersands (&) or percentage signs (%). Blank if #1E, TELOTHR = 0 (No) NACC UDS Data Element Dictionary TFP (version 2.0, February 2008) Form T1: page 10

13 2 Telephone Follow-up Form T1: Inclusion Form TELMILE Milestone form submitted Has a UDS Milestones Form documenting the change to telephone follow-up been completed? Column Positions = No 3 TELINPER Resume in-person visit in the future Is the subject likely to resume in-person UDS follow-up evaluations? Column Positions = No NACC UDS Data Element Dictionary TFP (version 2.0, February 2008) Form T1: page 11

14 Telephone Follow-up Form A1: Subject Demographics 1A BIRTHMO Subject s month of birth Subject s month of birth Length of Field 2 Column Positions Note: BIRTHMO is available to all researchers upon request. 1B BIRTHYR Subject s year of birth Subject s year of birth Column Positions to (current year minus 15) 2 SEX Subject s sex Subject s sex Column Positions 53 1 = Male 2 = Female NACC UDS Data Element Dictionary TFP (version 2.0, February 2008) Form A1: page 12

15 3 Column Positions 55 Telephone Follow-up Form A1: Subject Demographics LIVSIT Living situation What is the subject s living situation? 1 = Lives alone 2 = Lives with spouse or partner 3 = Lives with relative or friend 4 = Lives with group 5 = Other 3A Length of Field 60 LIVSITX Column Positions Living situation, other specify Living situation, other specify Character Any text or numbers but cannot use single quotes ( ), double quotes ( ), ampersands (&), or percentage signs (%). Blank if #3, LIVSIT 5 (Other). 4 INDEPEND Level of independence What is the subject s level of independence? Column Positions = Able to live independently 2 = Requires some assistance with complex activities 3 = Requires some assistance with basic activities 4 = Completely dependent NACC UDS Data Element Dictionary TFP (version 2.0, February 2008) Form A1: page 13

16 5 Column Positions 120 Telephone Follow-up Form A1: Subject Demographics RESIDENC Type of residence What is the subject s type of residence? 1 = Single family residence 2 = Retirement community 3 = Assisted living/boarding home/adult family home 4 = Skilled nursing facility/nursing home 5 = Other 5A Length of Field 60 RESIDENX Column Positions Type of residence, other specify Type of residence, other specify Character Any text or numbers but cannot use single quotes ( ), double quotes ( ), ampersands (&), or percentage signs (%). Blank if #5, RESIDENC 5 (Other). 6 ZIP Zip code Subject s primary residence zip code (first 3 digits) Length of Field 3 Column Positions Character Must be valid zip code, in the range Note: ZIP is available to all researchers upon request. NACC UDS Data Element Dictionary TFP (version 2.0, February 2008) Form A1: page 14

17 7 Column Positions 187 Telephone Follow-up Form A1: Subject Demographics MARISTAT Marital status Subject s current marital status 1 = Married 2 = Widowed 3 = Divorced 4 = Separated 5 = Never married 6 = Living as married 8 = Other 7A Length of Field 60 MARISTAX Column Positions Marital status, other specify Marital status, other specify Character Any text or numbers but cannot use single quotes ( ), double quotes ( ), ampersands (&), or percentage signs (%). Blank if #7, MARISTAT 8 (Other). NACC UDS Data Element Dictionary TFP (version 2.0, February 2008) Form A1: page 15

18 Telephone Follow-up Form A2: Informant Demographics 1A INBIRMO Informant s month of birth Informant s month of birth Length of Field 2 Column Positions B INBIRYR Informant s year of birth Informant s year of birth Column Positions to (current year minus 15) INSEX Informant s sex Informant s sex Column Positions 53 1 = Male 2 = Female NACC UDS Data Element Dictionary TFP (version 2.0, February 2008) Form A2: page 16

19 3 Column Positions 55 Telephone Follow-up Form A2: Informant Demographics NEWINF New informant Is this a new informant? 0 = No Skips If no, skip to item #9. 4 INHISP Informant Hispanic/Latino ethnicity Does the informant report being of Hispanic/Latino ethnicity (i.e., having origins from a mainly Spanish-speaking Latin American country), regardless of race? Column Positions 57 0 = No Skips If no or unknown, go to #5. NACC UDS Data Element Dictionary TFP (version 2.0, February 2008) Form A2: page 17

20 Telephone Follow-up Form A2: Informant Demographics 4A INHISPOR Informant Hispanic origins If informant reports being of Hispanic/Latino ethnicity, what are the informant s reported origins? Length of Field 2 Column Positions = Mexican/Chicano/Mexican-American 2 = Puerto Rican 3 = Cuban 4 = Dominican 5 = Central American 6 = South American 50 = Other 9 Blank if #4, INHISP = 0 (No) or 9 (Unknown). 4A1 INHISPOX Informant of Hispanic origins, other - specify Informant of Hispanic origins, other - specify Length of Field 60 Column Positions Character Any text or numbers but cannot use single quotes ( ), double quotes ( ), ampersands (&), or percentage signs (%). Blank if #4, INHISP = 0 (No) or 9 (Unknown), or #4A, INHISPOR 50 (Other). NACC UDS Data Element Dictionary TFP (version 2.0, February 2008) Form A2: page 18

21 5 Length of Field 2 Telephone Follow-up Form A2: Informant Demographics INRACE Informant race Column Positions What does informant report as his/her race? 1 = White 2 = Black or African American 3 = American Indian or Alaska Native 4 = Native Hawaiian or Other Pacific Islander 5 = Asian 50 = Other 9 5A Length of Field 60 INRACEX Column Positions Informant race, other specify Informant race, other specify Character Any text or numbers but cannot use single quotes ( ), double quotes ( ), ampersands (&), or percentage signs (%). Blank if #5, INRACE 50 (Other). NACC UDS Data Element Dictionary TFP (version 2.0, February 2008) Form A2: page 19

22 6 Length of Field 2 Telephone Follow-up Form A2: Informant Demographics INRASEC Column Positions Informant additional race What additional race does informant report? 1 = White 2 = Black or African American 3 = American Indian or Alaska Native 4 = Native Hawaiian or Other Pacific Islander 5 = Asian 50 = Other 88 = None reported 9 6A Length of Field 60 INRASECX Column Positions Informant additional race, other specify Informant additional race, other specify Character Any text or numbers but cannot use single quotes ( ), double quotes ( ), ampersands (&), or percentage signs (%). Blank if #6, INRASEC 50 (Other). NACC UDS Data Element Dictionary TFP (version 2.0, February 2008) Form A2: page 20

23 7 Telephone Follow-up Form A2: Informant Demographics INRATER Informant additional race What additional race, beyond what was indicated above in questions 4 and 5, does informant report? Length of Field 2 Column Positions = White 2 = Black or African American 3 = American Indian or Alaska Native 4 = Native Hawaiian or Other Pacific Islander 5 = Asian 50 = Other 88 = None reported 9 7A INRATERX Informant additional race, other specify Informant additional race, other specify Length of Field 60 Column Positions Character Any text or numbers but cannot use single quotes ( ), double quotes ( ), ampersands (&), or percentage signs (%). Blank if #7, INRATER 50 (Other). 8 INEDUC Informant education Informant s years of education (report achieved level using the codes below; if an attempted level is not completed, enter the number of years attended). High school/ged = 12; Bachelors degree = 16; Master s degree = 18; Doctorate = 20) Length of Field 2 Column Positions NACC UDS Data Element Dictionary TFP (version 2.0, February 2008) Form A2: page 21

24 9 Column Positions 318 Telephone Follow-up Form A2: Informant Demographics INRELTO Informant relationship What is informant s relationship to subject? 1 = Spouse/partner 2 = Child 3 = Sibling 4 = Other relative 5 = Friend/neighbor 6 = Paid caregiver/provider 7 = Other 9A Length of Field 60 INRELTOX Column Positions Informant relationship, other specify Informant relationship, other specify Character Any text or numbers but cannot use single quotes ( ), double quotes ( ), ampersands (&), or percentage signs (%). Blank if #9, INRELTO 7 (Other). 10 INLIVWTH Informant live with Does the informant live with the subject? Column Positions = No Skips If yes, skip to #11. NACC UDS Data Element Dictionary TFP (version 2.0, February 2008) Form A2: page 22

25 Telephone Follow-up Form A2: Informant Demographics 10A INVISITS Informant visits If informant does not live with the subject, approximate frequency of inperson visits. Column Positions = Daily 2 = At least 3x/week 3 = Weekly 4 = At least 3x/month 5 = Monthly 6 = Less than once a month Blank if #10, INLIVWTH = 1 (Yes). 10B INCALLS Informant telephone calls If informant does not live with the subject, approximate frequency of telephone contact. Column Positions = Daily 2 = At least 3x/week 3 = Weekly 4 = At least 3x/month 5 = Monthly 6 = Less than once a month Blank if #10, INLIVWTH = 1 (Yes). NACC UDS Data Element Dictionary TFP (version 2.0, February 2008) Form A2: page 23

26 Telephone Follow-up Form A2: Informant Demographics 11 INRELY Informant reliability Is there a question about the informant s reliability? Column Positions = No NACC UDS Data Element Dictionary TFP (version 2.0, February 2008) Form A2: page 24

27 Telephone Follow-up Form A3: Subject Family History G1 A3CHG Changes in family history since previous UDS visit Review with the subject/informant the data collected for this form at the previous UDS visit. If a version 2.0 Form A3 has been submitted previously and if there have been no changes, check this box and end form here. Column Positions 45 0 = box is not checked subject/informant has changes in family history 1 = box is checked no changes since previous visit, end form Skip If box is checked, end form here. G2 PARCHG Changes in parent information since previous UDS visit Provide all information below if it has not been previously submitted. If there has been any change, enter all data in the row for the appropriate parent. Otherwise, check this box and proceed to the next section. Column Positions 47 0 = box is not checked subject/informant has changes in parent history 1 = box is checked no changes since previous visit Blank if #G1, A3CHG = 1. Skip If box is checked proceed to the next section, siblings 1A MOMYOB Mother s year of birth Mother s year of birth Column Positions to current year minus Blank if #G1, A3CHG = 1 or #G2, PARCHG = 1. NACC UDS Data Element Dictionary TFP (version 2.0, February 2008) Form A3: page 25

28 Telephone Follow-up Form A3: Subject Family History 1B Column Positions 54 MOMLIV Mother living Is subject s mother still living? 0 = No Blank if #G1, A3CHG = 1 or #G2, PARCHG = 1. 1C MOMYOD Column Positions Mother s year of death If subject s mother is deceased, indicate year of death 1875 to current year 999 Blank if #G1, A3CHG = 1 or #G2, PARCHG = 1 or #1B, MOMLIV 0 (No). 1D MOMDEM Mother demented Does/did subject s mother have dementia, as indicated by symptoms, history or diagnosis? Column Positions 61 0 = No Blank if #G1, A3CHG = 1 or #G2, PARCHG = 1. NACC UDS Data Element Dictionary TFP (version 2.0, February 2008) Form A3: page 26

29 Length of Field 3 Telephone Follow-up Form A3: Subject Family History 1E MOMONSET Column Positions Mother s age at onset If subject s mother was demented, indicate age at onset Blank if #G1, A3CHG = 1 or #G2, PARCHG = 1 or #1D, MOMDEM 1 (Yes). 2A DADYOB Column Positions Father s year of birth Father s year of birth 1850 to current year minus Blank if #G1, A3CHG = 1 or #G2, PARCHG = 1. 2B Column Positions 72 DADLIV Father still living Is subject s father still living? 0 = No Blank if #G1, A3CHG = 1 or #G2, PARCHG = 1. NACC UDS Data Element Dictionary TFP (version 2.0, February 2008) Form A3: page 27

30 Telephone Follow-up Form A3: Subject Family History 2C DADYOD Column Positions Father s year of death If subject s father is deceased, indicate year of death 1875 to current year 999 Blank if #G1, A3CHG = 1 or #G2, PARCHG = 1 or #2B, DADLIV 0 (No). 2D DADDEM Father demented Does/did subject s father have dementia, as indicated by symptoms, history or diagnosis? Column Positions 79 0 = No Blank if #G1, A3CHG = 1 or #G2, PARCHG = 1. 2E DADONSET Father s age at onset. If subject s father was demented, indicate age at onset. Length of Field 3 Column Positions Blank if #G1, A3CHG = 1 or #G2, PARCHG = 1 or #2D, DADDEM 1 (Yes). NACC UDS Data Element Dictionary TFP (version 2.0, February 2008) Form A3: page 28

31 Telephone Follow-up Form A3: Subject Family History G3 SIBCHG Changes in sibling information since previous UDS visit Provide all information below if it has not been previously submitted. If there has been any change, enter all data in the row for the appropriate sibling. Otherwise, check this box and proceed to the next section. Column Positions 85 0 = box is not checked subject/informant has changes in sibling history 1 = box is checked no changes since previous visit Blank if #G1, A3CHG = 1. Skip If box is checked proceed to the next section, children 3 SIBS Siblings How many full siblings did the subject have? Length of Field 2 Column Positions Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1. 4A1 SIB1YOB Sibling 1 year of birth Sibling 1 year of birth Column Positions to current year 999 Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1. NACC UDS Data Element Dictionary TFP (version 2.0, February 2008) Form A3: page 29

32 Telephone Follow-up Form A3: Subject Family History 4B1 Column Positions 95 SIB1LIV Sibling 1 living Is Sibling 1 still living? 0 = No Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4A1, SIB1YOB = Blank. 4C1 SIB1YOD Sibling 1 year of death If Sibling 1 is deceased, indicate year of death Column Positions to current year 999 Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4B1, SIB1LIV 0 (No) or #4A1, SIB1YOB = Blank. 4D1 SIB1DEM Sibling 1, demented? Does/did Sibling 1 have dementia, as indicated by symptoms, history or diagnosis? Column Positions = No Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4A1, SIB1YOB = Blank. NACC UDS Data Element Dictionary TFP (version 2.0, February 2008) Form A3: page 30

33 Length of Field 3 Telephone Follow-up Form A3: Subject Family History 4E1 SIB1ONS Column Positions Sibling 1 age at onset If Sibling 1 demented, indicate age at onset = Age unknown Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4D1, SIB1DEM 1 (Yes) or #4A1, SIB1YOB = Blank. 4A2 SIB2YOB Column Positions Sibling 2 year of birth Sibling 2 year of birth 1875 to current year 999 Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1. 4B2 Column Positions 113 SIB2LIV Sibling 2 living Is Sibling 2 still living? 0 = No Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4A2, SIB2YOB = Blank. NACC UDS Data Element Dictionary TFP (version 2.0, February 2008) Form A3: page 31

34 Telephone Follow-up Form A3: Subject Family History 4C2 SIB2YOD Column Positions Sibling 2 year of death If Sibling 2 is deceased, indicate year of death 1875 to current year 999 Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4B2, SIB2LIV 0 (No) or #4A2, SIB2YOB = Blank. 4D2 SIB2DEM Sibling 2, demented Does/did Sibling 2 have dementia, as indicated by symptoms, history or diagnosis? Column Positions = No Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4A2, SIB2YOB = Blank. 4E2 SIB2ONS Sibling 2 age at onset If Sibling 2 demented, indicate age at onset Length of Field 3 Column Positions = Age unknown Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4D2, SIB2DEM 1 (Yes) or #4A2, SIB2YOB = Blank. NACC UDS Data Element Dictionary TFP (version 2.0, February 2008) Form A3: page 32

35 Telephone Follow-up Form A3: Subject Family History 4A3 SIB3YOB Column Positions Sibling 3 year of birth Sibling 3 year of birth 1875 to current year 999 Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1. 4B3 Column Positions 131 SIB3LIV Sibling 3 living Is Sibling 3 still living? 0 = No Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4A3, SIB3YOB = Blank. 4C3 SIB3YOD Sibling 3 year of death If Sibling 3 is deceased, indicate year of death Column Positions to current year 999 Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4B3, SIB3LIV 0 (No) or #4A3, SIB3YOB = Blank. NACC UDS Data Element Dictionary TFP (version 2.0, February 2008) Form A3: page 33

36 Telephone Follow-up Form A3: Subject Family History 4D3 SIB3DEM Sibling 3, demented Does/did Sibling 3 have dementia, as indicated by symptoms, history or diagnosis? Column Positions = No Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4A3, SIB3YOB = Blank. 4E3 SIB3ONS Sibling 3 age at onset If Sibling 3 demented, indicate age at onset Length of Field 3 Column Positions = Age unknown Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4D3, SIB3DEM 1 (Yes) or #4A3, SIB3YOB = Blank. 4A4 SIB4YOB Sibling 4 year of birth Sibling 4 year of birth Column Positions to current year 999 Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1. NACC UDS Data Element Dictionary TFP (version 2.0, February 2008) Form A3: page 34

37 Telephone Follow-up Form A3: Subject Family History 4B4 Column Positions 149 SIB4LIV Sibling 4 living Is Sibling 4 still living? 0 = No Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4A4, SIB4YOB = Blank. 4C4 SIB4YOD Sibling 4 year of death If Sibling 4 is deceased, indicate year of death Column Positions to current year 999 Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4B4, SIB4LIV 0 (No) or #4A4, SIB4YOB = Blank. 4D4 SIB4DEM Sibling 4, demented Does/did Sibling 4 have dementia, as indicated by symptoms, history or diagnosis? Column Positions = No Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4A4, SIB4YOB = Blank. NACC UDS Data Element Dictionary TFP (version 2.0, February 2008) Form A3: page 35

38 Length of Field 3 Telephone Follow-up Form A3: Subject Family History 4E4 SIB4ONS Column Positions Sibling 4 age at onset If Sibling 4 demented, indicate age at onset = Age unknown Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4D4, SIB4DEM 1 (Yes) or #4A4, SIB4YOB = Blank. 4A5 SIB5YOB Column Positions Sibling 5 year of birth Sibling 5 year of birth 1875 to current year 999 Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1. 4B5 Column Positions 167 SIB5LIV Sibling 5 living Is Sibling 5 still living? 0 = No Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4A5, SIB5YOB = Blank. NACC UDS Data Element Dictionary TFP (version 2.0, February 2008) Form A3: page 36

39 Telephone Follow-up Form A3: Subject Family History 4C5 SIB5YOD Column Positions Sibling 5 year of death If Sibling 5 is deceased, indicate year of death 1875 to current year 999 Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4B5, SIB5LIV 0 (No) or #4A5, SIB5YOB = Blank. 4D5 SIB5DEM Sibling 5, demented Does/did Sibling 5 have dementia, as indicated by symptoms, history or diagnosis? Column Positions = No Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4A5, SIB5YOB = Blank. 4E5 SIB5ONS Sibling 5 age at onset If Sibling 5 demented, indicate age at onset Length of Field 3 Column Positions = Age unknown Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4D5, SIB5DEM 1 (Yes) or #4A5, SIB5YOB = Blank. NACC UDS Data Element Dictionary TFP (version 2.0, February 2008) Form A3: page 37

40 Telephone Follow-up Form A3: Subject Family History 4A6 SIB6YOB Column Positions Sibling 6 year of birth Sibling 6 year of birth 1875 to current year 999 Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1. 4B6 Column Positions 185 SIB6LIV Sibling 6 living Is Sibling 6 still living? 0 = No Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4A6, SIB6YOB = Blank. 4C6 SIB6YOD Sibling 6 year of death If Sibling 6 is deceased, indicate year of death Column Positions to current year 999 Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4B6, SIB6LIV 0 (No) or #4A6, SIB6YOB = Blank. NACC UDS Data Element Dictionary TFP (version 2.0, February 2008) Form A3: page 38

41 Telephone Follow-up Form A3: Subject Family History 4D6 SIB6DEM Sibling 6, demented Did Sibling 6 have dementia, as indicated by symptoms, history or diagnosis? Column Positions = No Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4A6, SIB6YOB = Blank. 4E6 SIB6ONS Sibling 6 age at onset If Sibling 6 demented, indicate age at onset Length of Field 3 Column Positions = Age unknown Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4D6, SIB6DEM 1 (Yes) or #4A6, SIB6YOB = Blank. 4A7 SIB7YOB Sibling 7 year of birth Sibling 7 year of birth Column Positions to current year 999 Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1. NACC UDS Data Element Dictionary TFP (version 2.0, February 2008) Form A3: page 39

42 Telephone Follow-up Form A3: Subject Family History 4B7 Column Positions 203 SIB7LIV Sibling 7 living Is Sibling 7 still living? 0 = No Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4A7, SIB7YOB = Blank. 4C7 SIB7YOD Sibling 7 year of death If Sibling 7 is deceased, indicate year of death Column Positions to current year 999 Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4B7, SIB7LIV 0 (No) or #4A7, SIB7YOB = Blank. 4D7 SIB7DEM Sibling 7, demented? Does/did Sibling 7 have dementia, as indicated by symptoms, history or diagnosis? Column Positions = No Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4A7, SIB7YOB = Blank. NACC UDS Data Element Dictionary TFP (version 2.0, February 2008) Form A3: page 40

43 Length of Field 3 Telephone Follow-up Form A3: Subject Family History 4E7 SIB7ONS Column Positions Sibling 7 age at onset If Sibling 7 demented, indicate age at onset = Age unknown Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4D7, SIB7DEM 1 (Yes) or #4A7, SIB7YOB = Blank. 4A8 SIB8YOB Column Positions Sibling 8 year of birth Sibling 8 year of birth 1875 to current year 999 Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1. 4B8 Column Positions 221 SIB8LIV Sibling 8 living Is Sibling 8 still living? 0 = No Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4A8, SIB8YOB = Blank. NACC UDS Data Element Dictionary TFP (version 2.0, February 2008) Form A3: page 41

44 Telephone Follow-up Form A3: Subject Family History 4C8 SIB8YOD Column Positions Sibling 8 year of death If Sibling 8 is deceased, indicate year of death 1875 to current year 999 Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4B8, SIB8LIV 0 (No) or #4A8, SIB8YOB = Blank. 4D8 SIB8DEM Sibling 8, demented Does/did Sibling 8 have dementia, as indicated by symptoms, history or diagnosis? Column Positions = No Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4A8, SIB8YOB = Blank. 4E8 SIB8ONS Sibling 8 age at onset If Sibling 8 demented, indicate age at onset Length of Field 3 Column Positions = Age unknown Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4D8, SIB8DEM 1 (Yes) or #4A8, SIB8YOB = Blank. NACC UDS Data Element Dictionary TFP (version 2.0, February 2008) Form A3: page 42

45 Telephone Follow-up Form A3: Subject Family History 4A9 SIB9YOB Column Positions Sibling 9 year of birth Sibling 9 year of birth 1875 to current year 999 Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1. 4B9 Column Positions 239 SIB9LIV Sibling 9 living Is Sibling 9 still living? 0 = No Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4A9, SIB9YOB = Blank. 4C9 SIB9YOD Sibling 9 year of death If Sibling 9 is deceased, indicate year of death Column Positions to current year 999 Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4B9, SIB9LIV 0 (No) or #4A9, SIB9YOB = Blank. NACC UDS Data Element Dictionary TFP (version 2.0, February 2008) Form A3: page 43

46 Telephone Follow-up Form A3: Subject Family History 4D9 SIB9DEM Sibling 9, demented Does/did Sibling 9 have dementia, as indicated by symptoms, history or diagnosis? Column Positions = No Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4A9, SIB9YOB = Blank. 4E9 SIB9ONS Sibling 9 age at onset If Sibling 9 demented, indicate age at onset Length of Field 3 Column Positions = Age unknown Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4D9, SIB9DEM 1 (Yes) or #4A9, SIB9YOB = Blank. 4A10 SIB10YOB Sibling 10 year of birth Sibling 10 year of birth Column Positions to current year 999 Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1. NACC UDS Data Element Dictionary TFP (version 2.0, February 2008) Form A3: page 44

47 Telephone Follow-up Form A3: Subject Family History 4B10 Column Positions 257 SIB10LIV Sibling 10 living Is Sibling 10 still living? 0 = No Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4A10, SIB10YOB = Blank. 4C10 SIB10YOD Sibling 10 year of death If Sibling 10 is deceased, indicate year of death Column Positions to current year 999 Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4B10, SIB10LIV 0 (No) or #4A10, SIB10YOB = Blank. 4D10 SIB10DEM Sibling 10, demented Does/did Sibling 10 have dementia, as indicated by symptoms, history or diagnosis? Column Positions = No Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4A10, SIB10YOB = Blank. NACC UDS Data Element Dictionary TFP (version 2.0, February 2008) Form A3: page 45

48 Length of Field 3 Telephone Follow-up Form A3: Subject Family History 4E10 SIB10ONS Column Positions Sibling 10 age at onset If Sibling 10 demented, indicate age at onset = Age unknown Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4D10, SIB10DEM 1 (Yes) or #4A10, SIB10YOB = Blank. 4A11 SIB11YOB Column Positions Sibling 11 year of birth Sibling 11 year of birth 1875 to current year 999 Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1. 4B11 Column Positions 275 SIB11LIV Sibling 11 living Is Sibling 11 still living? 0 = No Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4A11, SIB11YOB = Blank. NACC UDS Data Element Dictionary TFP (version 2.0, February 2008) Form A3: page 46

49 Telephone Follow-up Form A3: Subject Family History 4C11 SIB11YOD Column Positions Sibling 11 year of death If Sibling 11 is deceased, indicate year of death 1875 to current year 999 Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4B11, SIB11LIV 0 (No) or #4A11, SIB11YOB = Blank. 4D11 SIB11DEM Sibling 11, demented Does/did Sibling 11 have dementia, as indicated by symptoms, history or diagnosis? Column Positions = No Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4A11, SIB11YOB = Blank. 4E11 SIB11ONS Sibling 11 age at onset If Sibling 11 demented, indicate age at onset Length of Field 3 Column Positions = Age unknown Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4D11, SIB11DEM 1 (Yes) or #4A11, SIB11YOB = Blank. NACC UDS Data Element Dictionary TFP (version 2.0, February 2008) Form A3: page 47

50 Telephone Follow-up Form A3: Subject Family History 4A12 SIB12YOB Column Positions Sibling 12 year of birth Sibling 12 year of birth 1875 to current year 999 Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1. 4B12 Column Positions 293 SIB12LIV Sibling 12 living Is Sibling 12 still living? 0 = No Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4A12, SIB12YOB = Blank. 4C12 SIB12YOD Sibling 12 year of death If Sibling 12 is deceased, indicate year of death Column Positions to current year 999 Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4B12, SIB12LIV 0 (No) or #4A12, SIB12YOB = Blank. NACC UDS Data Element Dictionary TFP (version 2.0, February 2008) Form A3: page 48

51 Telephone Follow-up Form A3: Subject Family History 4D12 SIB12DEM Sibling 12, demented Did Sibling 12 have dementia, as indicated by symptoms, history or diagnosis? Column Positions = No Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4A12, SIB12YOB = Blank. 4E12 SIB12ONS Sibling 12 age at onset If Sibling 12 demented, indicate age at onset Length of Field 3 Column Positions = Age unknown Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4D12, SIB12DEM 1 (Yes) or #4A12, SIB12YOB = Blank. 4A13 SIB13YOB Sibling 13 year of birth Sibling 13 year of birth Column Positions to current year 999 Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1. NACC UDS Data Element Dictionary TFP (version 2.0, February 2008) Form A3: page 49

52 Telephone Follow-up Form A3: Subject Family History 4B13 Column Positions 311 SIB13LIV Sibling 13 living Is Sibling 13 still living? 0 = No Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4A13, SIB13YOB = Blank. 4C13 SIB13YOD Sibling 13 year of death If Sibling 13 is deceased, indicate year of death Column Positions to current year 999 Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4B13, SIB13LIV 0 (No) or #4A13, SIB13YOB = Blank. 4D13 SIB13DEM Sibling 13, demented Does/did Sibling 13 have dementia, as indicated by symptoms, history or diagnosis? Column Positions = No Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4A13, SIB13YOB = Blank. NACC UDS Data Element Dictionary TFP (version 2.0, February 2008) Form A3: page 50

53 Length of Field 3 Telephone Follow-up Form A3: Subject Family History 4E13 SIB13ONS Column Positions Sibling 13 age at onset If Sibling 13 demented, indicate age at onset = Age unknown Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4D13, SIB13DEM 1 (Yes) or #4A13, SIB13YOB = Blank. 4A14 SIB14YOB Column Positions Sibling 14 year of birth Sibling 14 year of birth 1875 to current year 999 Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1. 4B14 Column Positions 329 SIB14LIV Sibling 14 living Is Sibling 14 still living? 0 = No Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4A14, SIB14YOB = Blank. NACC UDS Data Element Dictionary TFP (version 2.0, February 2008) Form A3: page 51

54 Telephone Follow-up Form A3: Subject Family History 4C14 SIB14YOD Column Positions Sibling 14 year of death If Sibling 14 is deceased, indicate year of death 1875 to current year 999 Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4B14, SIB14LIV 0 (No) or #4A14, SIB14YOB = Blank. 4D14 SIB14DEM Sibling 14, demented Does/did Sibling 14 have dementia, as indicated by symptoms, history or diagnosis? Column Positions = No Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4A14, SIB14YOB = Blank. 4E14 SIB14ONS Sibling 14 age at onset If Sibling 14 demented, indicate age at onset Length of Field 3 Column Positions = Age unknown Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4D14, SIB14DEM 1 (Yes) or #4A14, SIB14YOB = Blank. NACC UDS Data Element Dictionary TFP (version 2.0, February 2008) Form A3: page 52

55 Telephone Follow-up Form A3: Subject Family History 4A15 SIB15YOB Column Positions Sibling 15 year of birth Sibling 15 year of birth 1875 to current year 999 Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1. 4B15 Column Positions 347 SIB15LIV Sibling 15 living Is Sibling 15 still living? 0 = No Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4A15, SIB15YOB = Blank. 4C15 SIB15YOD Sibling 15 year of death If Sibling 15 is deceased, indicate year of death Column Positions to current year 999 Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4B15, SIB15LIV 0 (No) or #4A15, SIB15YOB = Blank. NACC UDS Data Element Dictionary TFP (version 2.0, February 2008) Form A3: page 53

56 Telephone Follow-up Form A3: Subject Family History 4D15 SIB15DEM Sibling 15, demented Does/did Sibling 15 have dementia, as indicated by symptoms, history or diagnosis? Column Positions = No Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4A15, SIB15YOB = Blank. 4E15 SIB15ONS Sibling 15 age at onset If Sibling 15 demented, indicate age at onset Length of Field 3 Column Positions = Age unknown Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4D15, SIB15DEM 1 (Yes) or #4A15, SIB15YOB = Blank. 4A16 SIB16YOB Sibling 16 year of birth Sibling 16 year of birth Column Positions to current year 999 Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1. NACC UDS Data Element Dictionary TFP (version 2.0, February 2008) Form A3: page 54

57 Telephone Follow-up Form A3: Subject Family History 4B16 Column Positions 365 SIB16LIV Sibling 16 living Is Sibling 16 still living? 0 = No Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4A16, SIB16YOB = Blank. 4C16 SIB16YOD Sibling 16 year of death If Sibling 16 is deceased, indicate year of death Column Positions to current year 999 Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4B16, SIB16LIV 0 (No) or #4A16, SIB16YOB = Blank. 4D16 SIB16DEM Sibling 16, demented Does/did Sibling 16 have dementia, as indicated by symptoms, history or diagnosis? Column Positions = No Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4A16, SIB16YOB = Blank. NACC UDS Data Element Dictionary TFP (version 2.0, February 2008) Form A3: page 55

58 Length of Field 3 Telephone Follow-up Form A3: Subject Family History 4E16 SIB16ONS Column Positions Sibling 16 age at onset If Sibling 16 demented, indicate age at onset = Age unknown Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4D16, SIB16DEM 1 (Yes) or #4A16, SIB16YOB = Blank. 4A17 SIB17YOB Column Positions Sibling 17 year of birth Sibling 17 year of birth 1875 to current year 999 Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1. 4B17 Column Positions 383 SIB17LIV Sibling 17 living Is Sibling 17 still living? 0 = No Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4A17, SIB17YOB = Blank. NACC UDS Data Element Dictionary TFP (version 2.0, February 2008) Form A3: page 56

59 Telephone Follow-up Form A3: Subject Family History 4C17 SIB17YOD Column Positions Sibling 17 year of death If Sibling 17 is deceased, indicate year of death 1875 to current year 999 Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4B17, SIB17LIV 0 (No) or #4A17, SIB17YOB = Blank. 4D17 SIB17DEM Sibling 17, demented Does/did Sibling 17 have dementia, as indicated by symptoms, history or diagnosis? Column Positions = No Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4A17, SIB17YOB = Blank. 4E17 SIB17ONS Sibling 17 age at onset If Sibling 17 demented, indicate age at onset Length of Field 3 Column Positions = Age unknown Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4D17, SIB17DEM 1 (Yes) or #4A17, SIB17YOB = Blank. NACC UDS Data Element Dictionary TFP (version 2.0, February 2008) Form A3: page 57

60 Telephone Follow-up Form A3: Subject Family History 4A18 SIB18YOB Column Positions Sibling 18 year of birth Sibling 18 year of birth 1875 to current year 999 Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1. 4B18 Column Positions 401 SIB18LIV Sibling 18 living Is Sibling 18 still living? 0 = No Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4A18, SIB18YOB = Blank 4C18 SIB18YOD Sibling 18 year of death If Sibling 18 is deceased, indicate year of death Column Positions to current year 999 Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4B18, SIB18LIV 0 (No) or #4A18, SIB18YOB = Blank. NACC UDS Data Element Dictionary TFP (version 2.0, February 2008) Form A3: page 58

61 Telephone Follow-up Form A3: Subject Family History 4D18 SIB18DEM Sibling 18, demented Does/did Sibling 18 have dementia, as indicated by symptoms, history or diagnosis? Column Positions = No Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4A18, SIB18YOB = Blank. 4E18 SIB18ONS Sibling 18 age at onset If Sibling 18 demented, indicate age at onset Length of Field 3 Column Positions = Age unknown Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4D18, SIB18DEM 1 (Yes) or #4A18, SIB18YOB = Blank. 4A19 SIB19YOB Sibling 19 year of birth Sibling 19 year of birth Column Positions to current year 999 Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1. NACC UDS Data Element Dictionary TFP (version 2.0, February 2008) Form A3: page 59

62 Telephone Follow-up Form A3: Subject Family History 4B19 Column Positions 419 SIB19LIV Sibling 19 living Is Sibling 19 still living? 0 = No Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4A19, SIB19YOB = Blank. 4C19 SIB19YOD Sibling 19 year of death If Sibling 19 is deceased, indicate year of death Column Positions to current year 999 Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4B19, SIB19LIV 0 (No) or #4A19, SIB19YOB = Blank. 4D19 SIB19DEM Sibling 19, demented Does/did Sibling 19 have dementia, as indicated by symptoms, history or diagnosis? Column Positions = No Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4A19, SIB19YOB = Blank. NACC UDS Data Element Dictionary TFP (version 2.0, February 2008) Form A3: page 60

63 Length of Field 3 Telephone Follow-up Form A3: Subject Family History 4E19 SIB19ONS Column Positions Sibling 19 age at onset If Sibling 19 demented, indicate age at onset = Age unknown Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4D19, SIB19DEM 1 (Yes) or #4A19, SIB19YOB = Blank. 4A20 SIB20YOB Column Positions Sibling 20 year of birth Sibling 20 year of birth 1875 to current year 999 Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1. 4B20 Column Positions 437 SIB20LIV Sibling 20 living Is Sibling 20 still living? 0 = No Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4A20, SIB20YOB = Blank. NACC UDS Data Element Dictionary TFP (version 2.0, February 2008) Form A3: page 61

64 Telephone Follow-up Form A3: Subject Family History 4C20 SIB20YOD Column Positions Sibling 20 year of death If Sibling 20 is deceased, indicate year of death 1875 to current year 999 Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4B20, SIB20LIV 0 (No) or #4A20, SIB20YOB = Blank. 4D20 SIB20DEM Sibling 20, demented Does/did Sibling 20 have dementia, as indicated by symptoms, history or diagnosis? Column Positions = No Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4A20, SIB20YOB = Blank. 4E20 SIB20ONS Sibling 20 age at onset If Sibling 20 demented, indicate age at onset Length of Field 3 Column Positions = Age unknown Blank if #G1, A3CHG = 1 or #G3, SIBCHG = 1 or #4D20, SIB20DEM 1 (Yes) or #4A20, SIB20YOB = Blank. NACC UDS Data Element Dictionary TFP (version 2.0, February 2008) Form A3: page 62

65 Telephone Follow-up Form A3: Subject Family History G4 KIDCHG Changes in children information since previous UDS visit Provide all information below if it has not been previously submitted. If there has been any change, enter all data in the row for the appropriate child. Otherwise, check this box and proceed to the next section. Column Positions = box is not checked subject/informant has changes in children history 1 = box is checked no changes since previous visit Blank if #G1, A3CHG = 1. Skip If box is checked proceed to the next section, other demented relatives 5 KIDS Children of subject How many biological children did the subject have? Length of Field 2 Column Positions Blank if #G1, A3CHG = 1 or #G4, KIDCHG = 1. 6A1 KID1YOB Child 1 year of birth Child 1 year of birth Column Positions to current year 999 Blank if #G1, A3CHG = 1 or #G4, KIDCHG = 1. NACC UDS Data Element Dictionary TFP (version 2.0, February 2008) Form A3: page 63

66 Telephone Follow-up Form A3: Subject Family History 6B1 Column Positions 460 KID1LIV Child 1 living Is Child 1 still living? 0 = No Blank if #G1, A3CHG = 1 or #G4, KIDCHG = 1 or #6A1, KID1YOB = Blank. 6C1 KID1YOD Child 1 year of death If Child 1 is deceased, indicate year of death Column Positions to current year 999 Blank if #G1, A3CHG = 1 or #G4, KIDCHG = 1 or #6B1, KID1LIV 0 (No) or #6A1, KID1YOB = Blank. 6D1 KID1DEM Child 1, demented Does/did Child 1 have dementia, as indicated by symptoms, history or diagnosis? Column Positions = No Blank if #G1, A3CHG = 1 or #G4, KIDCHG = 1 or #6A1, KID1YOB = Blank. NACC UDS Data Element Dictionary TFP (version 2.0, February 2008) Form A3: page 64

67 Length of Field 3 Telephone Follow-up Form A3: Subject Family History 6E1 KID1ONS Child 1 age at onset Column Positions If Child 1 demented, indicate age at onset = Age unknown Blank if #G1, A3CHG = 1 or #G4, KIDCHG = 1 or #6D1, KID1DEM 1 (Yes) or #6A1, KID1YOB = Blank. 6A2 KID2YOB Child 2 year of birth Child 2 year of birth Column Positions to current year 999 Blank if #G1, A3CHG = 1 or #G4, KIDCHG = 1. 6B2 Column Positions 478 KID2LIV Child 2 living Is Child 2 still living? 0 = No Blank if #G1, A3CHG = 1 or #G4, KIDCHG = 1 or #6A2, KID2YOB = Blank. NACC UDS Data Element Dictionary TFP (version 2.0, February 2008) Form A3: page 65

68 Telephone Follow-up Form A3: Subject Family History 6C2 KID2YOD Column Positions Child 2 year of death If Child 2 is deceased, indicate year of death 1910 to current year 999 Blank if #G1, A3CHG = 1 or #G4, KIDCHG = 1 or #6B2, KID2LIV 0 (No) or #6A2, KID2YOB = Blank. 6D2 KID2DEM Child 2, demented Does/did Child 2 have dementia, as indicated by symptoms, history or diagnosis? Column Positions = No Blank if #G1, A3CHG = 1 or #G4, KIDCHG = 1 or #6A2, KID2YOB = Blank. 6E2 KID2ONS Child 2 age at onset If Child 2 demented, indicate age at onset Length of Field 3 Column Positions = Age unknown Blank if #G1, A3CHG = 1 or #G4, KIDCHG = 1 or #6D2, KID2DEM 1 (Yes) or #6A2, KID2YOB = Blank. NACC UDS Data Element Dictionary TFP (version 2.0, February 2008) Form A3: page 66