Version 3.0, March 2015

Transcription

1 NACC UNIFORM data set FTLD MODULE Data Element Dictionary for IVP.0, March 2015 Copyright 2013, 2015 University of Washington. Created and published by the FTLD work group of the ADC Program (David Knopman, MD, Chair) and the National Alzheimer s Coordinating Center (Walter A. Kukull, PhD, Director). All rights reserved. This publication was funded by the National Institutes of Health through the National Institute on Aging (Cooperative Agreement U01 AG016976).

2 Revisions made to this DED since UDS3 implementation (March 15, 2015) Date yyyy-mm-dd Description Form(s) affected Question(s) affected Data element(s) affected Form Z1F replaced by Form Z1X Z1F All Numerous data elements added on language of aministration New Center codes added All Form header adcid

3 NACC UDS Initial Visit Packet FTLD Module Data Element Dictionary Glossary of Terms Indicates order of appearance on the UDS FTLD Module form For non-fixed format files, data element name must match exactly. Length of field Column positions and Skips Comments The question as it appears on the UDS FTLD Module form Length of this data element For fixed-field formats, column numbers for this data element Data element type as numerical or character List of codes with mapping instructions Instructions for skip patterns Other instructions as needed

4 Form Header 0A PACKET Packet code Column positions 1 2 Character IF = Initial Visit Packet 0B FORMID Form ID Length of field 3 Column positions 4 6 Character Z1F A3A B3F B9F C1F C2F C3F C4F C5F C6F E2F E3F 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,.0 is FORMVER = 3. NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 1

5 Form header 0D ADCID Center ID Column positions ; use code below as your Center ID: 2 = Boston University 3 = Case Western University 4 = Columbia University 5 = Duke University 6 = Emory University 7 = Massachusetts ADRC 8 = Indiana University 9 = Johns Hopkins University 10 = Mayo Clinic 11 = Mount Sinai 12 = New York University 13 = Northwestern University 14 = Oregon Health & Science University 15 = Rush University 16 = University of California, Davis 17 = University of California, Los Angeles 18 = University of California, San Diego 19 = University of Kentucky 20 = University of Michigan 21 = University of Pennsylvania 22 = University of Pittsburgh 25 = University of Texas Southwestern 26 = University of Washington 27 = Washington University in St. Louis 28 = University of Alabama 30 = University of Southern California 31 = University of California, Irvine 32 = Stanford University 33 = Arizona ADC 34 = University of Arkansas 35 = University of California, San Francisco 36 = Florida ADC 37 = University of Wisconsin 38 = University of Kansas 39 = Stanford University2 40 = Yale University 41 = 1Florida ADRC 42 = Wake Forest University 43 = University of Michigan ADC NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 2

6 Form header 0E PTID ADC Subject ID 0 Column positions Character Follow your Center s Subject ID scheme. Must be same as UDS ID. Any text or numbers, but cannot include single quotes ( ), double quotes ("), ampersands (&) or percentage signs (%) Comment Number must be unique within data from your Center and be used for each visit for subject. Note: PTID is not available to researchers. It is replaced in the accessible UDS database by a randomly generated NACC ID called NACCID. NACCIDs begin with the characters NACC. 0F VISITMO Form date month Column positions Comment Form date cannot precede March 1, G VISITDAY Form date day Column positions Comment Form date cannot precede March 1, H VISITYR Form date year Length of field 4 Column positions to present year Comment Form date cannot precede March 1, NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 3

7 Form header 0I VISITNUM ADC visit number Length of field 3 Column positions Character Can be determined by the Center. Comment The Center can use its existing visit number scheme if desired. It is NOT required to start with 1. 0J INITIALS Examiner s initials Length of field 3 Column positions Character Any text or numbers, but cannot include single quotes ( ), double quotes ( ), ampersands (&) or percentage signs (%) NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 4

8 Form Z1X Form Checklist 1a LANGA1 A1 Subject Demographics language Column positions Num 1 = English 2 = Spanish 2a LANGA2 A2 Co-participant Demographics language Column positions Num 1 = English 2 = Spanish Blank if #2b A2SUB = 0 (No) 2b A2SUB A2 Co-participant Demographics submitted Column positions Num 2c A2NOT If A2 not submitted, specify reason Column positions Num 95 = Physical problem 96 = Cognitive/behavior problem 97 = Other problem 98 = Verbal refusal Blank if #2b A2SUB = 1 (Yes) NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 5

9 Form Z1X Form Checklist Cont. 3a LANGA3 A3 Subject Family History language Column positions Num 1 = English 2 = Spanish Blank if #3b A3SUB = 0 (No) 3b A3SUB A3 Subject Family History submitted Column positions Num 3c A3NOT If A3 not submitted, specify reason Column positions Num 95 = Physical problem 96 = Cognitive/behavior problem 97 = Other problem 98 = Verbal refusal Blank if #3b A3SUB = 1 (Yes) 4a LANGA4 A4 Subject Medications language Column positions Num 1 = English 2 = Spanish Blank if #4b A4SUB = 0 (No) NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 6

10 Form Z1X Form Checklist Cont. 4b A4SUB A4 Subject Medications submitted Column positions Num 4c A4NOT If A4 not submitted, specify reason Column positions Num 95 = Physical problem 96 = Cognitive/behavior problem 97 = Other problem 98 = Verbal refusal Blank if #4b A4SUB = 1 (Yes) 5a LANGA5 A5 Subject Health History language Column positions Num 1 = English 2 = Spanish 6a LANGB1 B1 Evaluation Form: Physical language Column positions Num 1 = English 2 = Spanish Blank if #6b B1SUB = 0 (No) NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 7

11 Form Z1X Form Checklist Cont. 6b B1SUB B1 Evaluation Form: Physical submitted Column positions Num 6c B1NOT If B1 not submitted, specify reason Column positions Num 95 = Physical problem 96 = Cognitive/behavior problem 97 = Other problem 98 = Verbal refusal Blank if #6b B1SUB = 1 (Yes) 7a LANGB4 B4 Global Staging CDR: Standard and Supplemental language Column positions Num 1 = English 2 = Spanish 8a LANGB5 B5 Behavioral Assessment: NPI-Q language Column positions Num 1 = English 2 = Spanish Blank if #8b B5SUB = 0 (No) NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 8

12 Form Z1X Form Checklist Cont. 8b B5SUB B5 Behavioral Assessment: NPI-Q submitted Column positions Num 8c B5NOT If B5 not submitted, specify reason Column positions Num 95 = Physical problem 96 = Cognitive/behavior problem 97 = Other problem 98 = Verbal refusal Blank if #8b B5SUB = 1 (Yes) 9a LANGB6 B6 Behavioral Assessment: GDS language Column positions Num 1 = English 2 = Spanish Blank if #9b B6SUB = 0 (No) 9b B6SUB B6 Behavioral Assessment: GDS submitted Column positions Num NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 9

13 Form Z1X Form Checklist Cont. 9c B6NOT If B6 not submitted, specify reason Column positions Num 95 = Physical problem 96 = Cognitive/behavior problem 97 = Other problem 98 = Verbal refusal Blank if #9b B6SUB = 1 (Yes) 10a LANGB7 B7 Functional Assessment: FAS language Column positions Num 1 = English 2 = Spanish Blank if #10b B7SUB = 0 (No) 10b B7SUB B7 Functional Assessment: FAS submitted Column positions Num 10c B7NOT If B7 not submitted, specify reason Column positions Num 95 = Physical problem 96 = Cognitive/behavior problem 97 = Other problem 98 = Verbal refusal Blank if #10b B7SUB = 1 (Yes) NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 10

14 Form Z1X Form Checklist Cont. 11a LANGB8 B8 Neurological Examination Findings language Column positions Num 1 = English 2 = Spanish 12a LANGB9 B9 Clinician Judgment of Symptoms language Column positions Num 1 = English 2 = Spanish 13a LANGC2 C2 Neurological Battery Scores language Column positions Num 1 = English 2 = Spanish 14a LANGD1 D1 Clinician Diagnosis language Column positions Num 1 = English 2 = Spanish NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 11

15 Form Z1X Form Checklist Cont. 15a LANGD2 D2 Clinician-assessed Medical Conditions language Column positions Num 1 = English 2 = Spanish 16a LANGA3A A3A Record of consent for biologic specimen use language Column positions Num 1 = English 2 = Spanish Blank if #16b FTDA3AFS = 0 (No) 16b FTDA3AFS A3A Record of consent for biologic specimen use submitted Column positions Num 16c FTDA3AFR If A3A not submitted, specify reason Column positions Num 95 = Physical problem 96 = Cognitive/behavior problem 97 = Other problem 98 = Verbal refusal 9 or inadequate information Blank if #16b FTDA3AFS = 1 (Yes) NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 12

16 Form Z1X Form Checklist Cont. 17a LANGB3F B3F Supplemental UPDRS language Column positions Num 1 = English 2 = Spanish 18a LANGB9F B9F Clinical PPA and bvftd Features language Column positions Num 1 = English 2 = Spanish 19a LANGC1F C1F Neuropsychological Battery Summary Scores language Column positions Num 1 = English 2 = Spanish 20a LANGC2F C2F Social Norms Questionnaire language Column positions Num 1 = English 2 = Spanish NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 13

17 Form Z1X Form Checklist Cont. 21a LANGC3F C3F Social Behavior Observer Checklist language Column positions Num 1 = English 2 = Spanish 22a LANGC4F C4F Behavioral Inhibition Scale language Column positions Num 1 = English 2 = Spanish Blank if #22b FTDC4FS = 0 (No) 22b FTDC4FS C4F Behavioral Inhibition Scale submitted Column positions Num 22c FTDC4FR If C4F not submitted, specify reason Column positions Num 95 = Physical problem 96 = Cognitive/behavior problem 97 = Other problem 98 = Verbal refusal 9 or inadequate information Blank if #22b FTDC4FS = 1 (Yes) NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 14

18 Form Z1X Form Checklist Cont. 23a LANGC5F C5F Interpersonal Reactivity Index language Column positions Num 1 = English 2 = Spanish Blank if #23b FTDC5FS = 0 (No) 23b FTDC5FS C5F Interpersonal Reactivity Index submitted Column positions Num 23c FTDC5FR If C5F not submitted, specify reason Column positions Num 95 = Physical problem 96 = Cognitive/behavior problem 97 = Other problem 98 = Verbal refusal 9 or inadequate information Blank if #23b FTDC5FS = 1 (Yes) 24a LANGC6F C6F Revised self-monitoring scale language Column positions Num 1 = English 2 = Spanish Blank if #24b FTDC6FS = 0 (No) NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 15

19 Form Z1X Form Checklist Cont. 24b FTDC6FS C6F Revised self-monitoring scale submitted Column positions Num 24c FTDC6FR If C6F not submitted, specify reason Column positions Num 95 = Physical problem 96 = Cognitive/behavior problem 97 = Other problem 98 = Verbal refusal 9 or inadequate information Blank if #24b FTDC6FS,= 1 (Yes) 25a LANGE2F E2F Imaging Available language Column positions Num 1 = English 2 = Spanish 26a LANGE3F E3F Imaging in Diagnosis language Column positions Num 1 = English 2 = Spanish NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 16

20 Form Z1X Form Checklist Cont. 27a LANGCLS CLS Language language Column positions Num 1 = English 2 = Spanish Blank if #27b CLSSUB = 0 (No) 27b CLSSUB CLS Subject Language History submitted Column positions Num NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 17

21 Form A3a Record of Consent for Biologic Specimen Use 1 FTDRELCO What relative s consent is being recorded on this form? Column positions = Mother 2 = Father 3 = Sibling 4 = Child 1 FTDSIBBY Sibling s birth year Length of field 4 Column positions Blank if Question 1 FTDRELCO 3 (Sibling) 1 FTDCHDBY Child s birth year Length of field 4 Column positions Blank if Question 1 FTDRELCO 4 (Child) 1a FTDSTORE I permit my sample to be stored and used in future research of neurologic disease at (home institution). Column positions NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 18

22 Form A3a RECORD OF CONSENT FOR BIOLOGIC SPECIMEN 1b FTDSLEAR I permit my sample to be stored and used in future research at (home institution) to learn about, prevent, or treat other health problems. Column positions c FTDCOMME There is a small chance that some commercial value may result from my sample at the National Cell Repository for Alzheimer s Disease (NCRAD). If that would happen, I would not be offered a share in any profits. I permit (home institution) to give my sample to researchers at other institutions. Column positions NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 19

23 Form B3F Supplemental UPDRS A1 FTDLTFAS Does the subject have limb or torso fasciculations consistent with a diagnosis of spinal muscular atrophy (SMA) or amyotrophic lateral sclerosis (ALS)*? Column positions t to a degree that would justify such a diagnosis with asymmetry L>R 2 = Yes with asymmetry R>L 3 = Yes without major asymmetry A2 FTDLIMB Does the subject have limb weakness and/or hyperreflexia consistent with a diagnosis of primary lateral sclerosis (PLS) or ALS*? Column positions t to a degree that would justify such a diagnosis with asymmetry L>R 2 = Yes with asymmetry R>L 3 = Yes without major asymmetry A3 FTDBULB Does the subject have bulbar weakness and/or fasciculations consistent with a diagnosis of ALS*? Column positions t to a degree that would justify such a diagnosis 3 = Yes without major asymmetry NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 20

24 Form B3F Supplemental UPDRS cont. B1 FTDGSEV Column positions Gait disturbances severity? rmal 1 = Slight alteration in speed or fluidity of gait 2 = Walks with difficulty but requires no assistance 3 = Severe disturbance 4 = Cannot walk at all 8 = Untestable (specify reason) B1a FTDGSEVX Gait disturbances severity: Specification of reason untestable Length of field 60 Column positions Character Any text or numbers with the exception of single quotes ( ), double quotes ( ), ampersands (&), and percentage signs (%). Blank if Question B1 FTDGSEV 8 (Untestable) B2 FTDGTYP Gait disturbances type? Column positions rmal 1 = Hemiparetic (spastic) 2 = Foot drop gait (lower motor neuron) 3 = Ataxic gait 4 = Parkinsons gait 5 = Apractic gait (magnetic gait) 6 = Antalgic gait 7 = Other gait disorder not listed above (specify) 8 = Untestable (specify reason) NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 21

25 Form B3F Supplemental UPDRS cont. B2a Length of field 60 FTDGTYPG Column positions Gait disturbances type: Other gait disorder not listed above (specify) Character Any text or numbers with the exception of single quotes ( ), double quotes ( ), ampersands (&), and percentage signs (%). Blank if Question B2 FTDGTYP 7 (Other gait disorder not listed above) B2b FTDGTYPX Gait disturbances type: Untestable (specify reason) Length of field 60 Column positions Character Any text or numbers with the exception of single quotes ( ), double quotes ( ), ampersands (&), and percentage signs (%). Blank if Question B2 FTDGTYP 8 (Untestable) NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 22

26 Form B9F Clinical PPA and bvftd Features 1 FTDPPASL Column positions PPA: Is acquired disorder of language a prominent element in presentation Skips If Question 1 FTDPPASL = 0 (No), then skip to Question 14 2 FTDPPAPO Clinical PPA: Poor object naming Column positions = Absent 1 = Questionably present 2 = Definitely present 9 = Not evaluated Blank if Question 1 FTDPPASL = 0 (No) 3 FTDPPAIW Clinical PPA: Improvised word selection/retrieval in spontaneous speech Column positions = Absent 1 = Questionably present 2 = Definitely present 9 = Not evaluated Blank if Question 1 FTDPPASL = 0 (No) NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 23

27 Form B9F Clinical PPA and bvftd Features cont. 4 FTDPPASW Column positions PPA Clinical: Impaired word comprehension 0 = Absent 1 = Questionably present 2 = Definitely present 9 = Not evaluated Blank if Question 1 FTDPPASL = 0 (No) 5 FTDPPAPK Clinical PPA: Poor object/ person knowledge Column positions = Absent 1 = Questionably present 2 = Definitely present 9 = Not evaluated Blank if Question 1 FTDPPASL = 0 (No) 6 FTDPPAGS Clinical PPA: Grammatical simplification or grammatical errors in speech Column positions = Absent 1 = Questionably present 2 = Definitely present 9 = Not evaluated Blank if Question 1 FTDPPASL = 0 (No) NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 24

28 Form B9F Clinical PPA and bvftd Features cont. 7 FTDPPAEH Column positions Clinical PPA: Effortful, halting speech 0 = Absent 1 = Questionably present 2 = Definitely present 9 = Not evaluated Blank if Question 1 FTDPPASL = 0 (No) 8 FTDPPACS Clinical PPA: Circumlocutory speech, empty speech Column positions = Absent 1 = Questionably present 2 = Definitely present 9 = Not evaluated Blank if Question 1 FTDPPASL = 0 (No) 9 FTDPPASS Clinical PPA: Speech sound/ word errors (paraphasias) Column positions = Absent 1 = Questionably present 2 = Definitely present 9 = Not evaluated Blank if Question 1 FTDPPASL = 0 (No) NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 25

29 Form B9F Clinical PPA and bvftd Features cont. 10 FTDPPASR Column positions Clinical PPA: Impaired speech repetition 0 = Absent 1 = Questionably present 2 = Definitely present 9 = Not evaluated Blank if Question 1 FTDPPASL = 0 (No) 11 FTDPPASD Clinical PPA: Surface dyslexia Column positions = Absent 1 = Questionably present 2 = Definitely present 9 = Not evaluated Blank if Question 1 FTDPPASL = 0 (No) 12 FTDCPPA Root diagnosis of PPA? Column positions Blank if Question 1 FTDPPASL = 0 (No) Skips If Question 12 FTDCPPA = 0 (No), then skip to Question 14 NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 26

30 Form B9F Clinical PPA and bvftd Features cont. 13 FTDCPPAS Column positions Consensus diagnosis of dominant PPA subtype 1 = PPA, semantic variant (semppa) 2 = PPA, nonfluent/agrammatic variant (nf/gppa) 3 = PPA, Logopenic PPA 4 = PPA not otherwise specified Blank if Question 1 FTDPPASL = 0 (No) Blank if Question 12 FTDCPPA = 0 (No) 14 FTDBVCLN bvftd: Are acquired alterations in behavior, personality, or comportment important elements in the clinical presentation of the subject? (I.e., at least one of the characteristics described in Questions is Definitely present.) Column positions Skips If Question 14 FTDBVCLN = 0 (No), then skip to Question FTDBVDIS bvftd features: Disinhibition Column positions = Absent 1 = Questionably present 2 = Definitely present 9 = Not evaluated Blank if Question 14 FTDBVCLN = 0 (No) NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 27

31 Form B9F Clinical PPA and bvftd Features cont. 16 FTDBVAPA Column positions bvftd features: Apathy or inertia 0 = Absent 1 = Questionably present 2 = Definitely present 9 = Not evaluated Blank if Question 14 FTDBVCLN = 0 (No) 17 FTDBVLOS bvftd features: Loss of sympathy/ empathy Column positions = Absent 1 = Questionably present 2 = Definitely present 9 = Not evaluated Blank if Question 14 FTDBVCLN = 0 (No) 18 FTDBVRIT bvftd features: Ritualistic/ compulsive behavior Column positions = Absent 1 = Questionably present 2 = Definitely present 9 = Not evaluated Blank if Question 14 FTDBVCLN = 0 (No) NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 28

32 Form B9F Clinical PPA and bvftd Features cont. 19 FTDBVHYP Column positions bvftd features: Hyperorality and appetite changes 0 = Absent 1 = Questionably present 2 = Definitely present 9 = Not evaluated Blank if Question 14 FTDBVCLN = 0 (No) 20 FTDBVNEU bvftd features: Changes on neuropsychological testing consistent with bvftd Column positions = Absent 1 = Questionably present 2 = Definitely present 9 = Not evaluated Blank if Question 14 FTDBVCLN = 0 (No) 21 FTDBVIDL bvftd: Impaired daily functioning Column positions = Absent 1 = Questionably present 2 = Definitely present 9 = Not evaluated Blank if Question 14 FTDBVCLN = 0 (No) NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 29

33 Form B9F Clinical PPA and bvftd Features cont. 22 FTDBVFT Column positions Does patient meet the criteria for clinical probable or possible bvftd syndrome? 0 = Does not meet criteria for bvftd 1 = Probable bvftd 2 = Meets criteria for possible bvftd and has impaired daily functioning 3 = Meets criteria for possible bvftd but daily functioning is not impaired Blank if Question 14 FTDBVCLN = 0 (No) 23 FTDEMGPV Was an electromyogram (EMG) performed at this visit? Column positions Skips If Question 23 FTDEMGPV = 1 (Yes), then skip to Question FTDEMGPY Has an EMG been performed in the past year? Column positions Blank if Question 23 FTDEMGPV = 1 (Yes) Skips If Question 24 FTDEMGPY = 0 (No), then skip to Question 26 NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 30

34 Form B9F Clinical PPA and bvftd Features cont. 25 FTDEMGMN Column positions If an EMG was performed, did it show evidence of motor neuron disease? 9 = Uncertain Blank if Question 24 FTDEMGPY = 0 (No) 26 FTDPABVF In patients with a diagnosis of PPA or bvftd, which diagnosis appeared first? Column positions = bvftd 2 = PPA, semantic variant 3 = PPA, nonfluent/agrammatic variant 4 = PPA, Logopenic variant 5 = PPA not otherwise specified Blank if Question 12 FTDCPPA = 0 (No) Blank if Question 12 FTDCPPA = blank Blank if Question 22 FTDBVFT = 0 (Does not meet criteria) Blank if Question 22 FTDBVFT = blank NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 31

35 Form C1F Neuropsychological Battery Summary Scores 1a FTDWORRC Total completely accurate words (0-15) Column positions = Physical problem 96 = Cognitive/behavoir problem 97 = Other problem 98 = Verbal refusal Skips If test not completed, enter reason code, 95-98, and skip to Question 2a 1b FTDWORRS Total semantically related inaccurate words (0-15) Column positions Blank if Question 1a FTDWORRC = c FTDWORRR Total other phonologically related words or nonword errors (0 15) Column positions Blank if Question 1a FTDWORRC = NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 32

36 Form C1F Neuropsychological Battery Summary Scores cont. 1d FTDWORIC Total completely accurate words (0-15) Column positions Blank if Question 1a FTDWORRC = e FTDWORIS Total semantically related inaccurate words (0-15) Column positions Blank if Question 1a FTDWORRC = f FTDWORIR Total words that are regularized (read using phonics, e.g., sew read as sue) Column positions Blank if Question 1a FTDWORRC = g FTDWORIP Total other phonologically related words or nonword errors (0-15) Column positions Blank if Question 1a FTDWORRC = NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 33

37 Form C1F Neuropsychological Battery Summary Scores cont. 2a FTDSEMMT Column positions Total correct word-picture matches(0-20) = Physical problem 96 = Cognitive/behavoir problem 97 = Other problem 98 = Verbal refusal Skips If test not completed, enter reason code, 95-98, and skip to Question 3a 3a FTDSEMAA Total correct animal associations (0-8) Column positions = Physical problem 96 = Cognitive/behavoir problem 97 = Other problem 98 = Verbal refusal Skips If test not completed, enter reason code, 95-98, and skip to Question 4a 3b FTDSEMTA Total correct tool associations (0-8) Column positions Blank if Question 3a FTDSEMAA = NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 34

38 Form C1F Neuropsychological Battery Summary Scores cont. 3c FTDSEMSU Sum of all correct associations (Semantic Associates Test total score) (0-16) Column positions Blank if Question 3a FTDSEMAA = a FTDANASW Correct subject who-questions (0-5) Column positions = Physical problem 96 = Cognitive/behavoir problem 97 = Other problem 98 = Verbal refusal Skips If test not completed, enter reason code, 95-98, and skip to Question 5a 4b FTDANAOW Correct object who-questions (0-5) Column positions Blank if Question 4a FTDANASW = c FTDANATS Total score: sum of all correct questions (0-10) Column positions Blank if Question 4a FTDANASW = NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 35

39 Form C1F Neuropsychological Battery Summary Scores cont. 5a FTDSENAS Number of completely accurate sentences (0-5) Column positions = Physical problem 96 = Cognitive/behavoir problem 97 = Other problem 98 = Verbal refusal Skips If test not completed, enter reason code, 95-98, and skip to Question 6a 5b FTDSENOS Total number of words omitted from sentences (0-37) Column positions Blank if Question 5a FTDSENAS = c FTDSENSR Total number of semantically related or unrelated incorrect real words (0-20) Column positions Blank if Question 5a FTDSENAS = d FTDSENPR Total number of phonologically related words or nonword errors (0-20) Column positions Blank if Question 5a FTDSENAS = NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 36

40 Form C1F Neuropsychological Battery Summary Scores cont. 6a FTDNOUNC Total nouns correct (0-16) Column positions = Physical problem 96 = Cognitive/behavior problem 97 = Other problem 98 = Verbal refusal Skips If test not completed, enter reason code, 95-98, and skip to Question 7a 6b FTDVERBC Total verbs correct (0-16) Column positions Blank if Question 6a FTDNOUNC = c FTDRATIO Noun-to-verb ratio (total nouns correct/total verbs correct) Length of field 5 Column positions Blank if Question 6a FTDNOUNC = a FTDREAAS Number of completely accurate sentences (0-5) Column positions = Physical problem 96 = Cognitive/behavoir problem 97 = Other problem 98 = Verbal refusal Skips If test not completed, enter reason code, 95-98, and end form here NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 37

41 Form C1F Neuropsychological Battery Summary Scores cont. 7b FTDREAOS Total number of words omitted from sentence (0-37) Column positions Blank if Question 7a FTDREAAS = c FTDREASR Total number of semantically related or unrelated incorrect real words (0-20) Column positions Blank if Question 7a FTDREAAS = d FTDREAPR Total number of phonologically related words or nonword errors (0-20) Column positions Blank if Question 7a FTDREAAS = NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 38

42 Form C2F Social Norms Questionnaire 0 FTDCPC2F Reason form not completed Column positions = Physical problem 96 = Cognitive/behavior problem 97 = Other problem 98 = Verbal refusal Blank if form completed Skips End form if value is 95, 96, 97, or 98 1 FTDHAIRD Tell a stranger you don t like their hairstyle? Column positions Blank if Question 0 FTDCPC2F = 95 Blank if Question 0 FTDCPC2F = 96 Blank if Question 0 FTDCPC2F = 97 Blank if Question 0 FTDCPC2F = 98 Blank if question not answered 2 FTDSPIT Spit on the floor? Column positions Blank if Question 0 FTDCPC2F = 95 Blank if Question 0 FTDCPC2F = 96 Blank if Question 0 FTDCPC2F = 97 Blank if Question 0 FTDCPC2F = 98 Blank if question not answered NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 39

43 Form C2F Social Norms Questionnaire cont. 3 FTDNOSE Blow your nose in public? Column positions Blank if Question 0 FTDCPC2F = 95 Blank if Question 0 FTDCPC2F = 96 Blank if Question 0 FTDCPC2F = 97 Blank if Question 0 FTDCPC2F = 98 Blank if question not answered 4 FTDCOAGE Ask a coworker their age? Column positions Blank if Question 0 FTDCPC2F = 95 Blank if Question 0 FTDCPC2F = 96 Blank if Question 0 FTDCPC2F = 97 Blank if Question 0 FTDCPC2F = 98 Blank if question not answered 5 FTDCRY Cry during a movie at the theater? Column positions Blank if Question 0 FTDCPC2F = 95 Blank if Question 0 FTDCPC2F = 96 Blank if Question 0 FTDCPC2F = 97 Blank if Question 0 FTDCPC2F = 98 Blank if question not answered NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 40

44 Form C2F Social Norms Questionnaire cont. 6 FTDCUT Cut in line if you are in a hurry? Column positions Blank if Question 0 FTDCPC2F = 95 Blank if Question 0 FTDCPC2F = 96 Blank if Question 0 FTDCPC2F = 97 Blank if Question 0 FTDCPC2F = 98 Blank if question not answered 7 FTDYTRIP Laugh when you yourself trip and fall? Column positions Blank if Question 0 FTDCPC2F = 95 Blank if Question 0 FTDCPC2F = 96 Blank if Question 0 FTDCPC2F = 97 Blank if Question 0 FTDCPC2F = 98 Blank if question not answered 8 FTDEATP Eat pasta with your fingers? Column positions Blank if Question 0 FTDCPC2F = 95 Blank if Question 0 FTDCPC2F = 96 Blank if Question 0 FTDCPC2F = 97 Blank if Question 0 FTDCPC2F = 98 Blank if question not answered NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 41

45 Form C2F Social Norms Questionnaire cont. 9 FTDTELLA Tell a coworker your age? Column positions Blank if Question 0 FTDCPC2F = 95 Blank if Question 0 FTDCPC2F = 96 Blank if Question 0 FTDCPC2F = 97 Blank if Question 0 FTDCPC2F = 98 Blank if question not answered 10 FTDOPIN Tell someone your opinion of a movie they haven t seen? Column positions Blank if Question 0 FTDCPC2F = 95 Blank if Question 0 FTDCPC2F = 96 Blank if Question 0 FTDCPC2F = 97 Blank if Question 0 FTDCPC2F = 98 Blank if question not answered 11 FTDLAUGH Laugh when someone else trips and falls? Column positions Blank if Question 0 FTDCPC2F = 95 Blank if Question 0 FTDCPC2F = 96 Blank if Question 0 FTDCPC2F = 97 Blank if Question 0 FTDCPC2F = 98 Blank if question not answered NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 42

46 Form C2F Social Norms Questionnaire cont. 12 FTDSHIRT Wear the same shirt every day? Column positions Blank if Question 0 FTDCPC2F = 95 Blank if Question 0 FTDCPC2F = 96 Blank if Question 0 FTDCPC2F = 97 Blank if Question 0 FTDCPC2F = 98 Blank if question not answered 13 FTDKEEPM Keep money you find on the sidewalk? Column positions Blank if Question 0 FTDCPC2F = 95 Blank if Question 0 FTDCPC2F = 96 Blank if Question 0 FTDCPC2F = 97 Blank if Question 0 FTDCPC2F = 98 Blank if question not answered 14 FTDPICKN Pick your nose in public? Column positions Blank if Question 0 FTDCPC2F = 95 Blank if Question 0 FTDCPC2F = 96 Blank if Question 0 FTDCPC2F = 97 Blank if Question 0 FTDCPC2F = 98 Blank if question not answered NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 43

47 Form C2F Social Norms Questionnaire cont. 15 FTDOVER Tell a coworker you think they are overweight? Column positions Blank if Question 0 FTDCPC2F = 95 Blank if Question 0 FTDCPC2F = 96 Blank if Question 0 FTDCPC2F = 97 Blank if Question 0 FTDCPC2F = 98 Blank if question not answered 16 FTDEATR Eat ribs with your fingers? Column positions Blank if Question 0 FTDCPC2F = 95 Blank if Question 0 FTDCPC2F = 96 Blank if Question 0 FTDCPC2F = 97 Blank if Question 0 FTDCPC2F = 98 Blank if question not answered 17 FTDHAIRL Tell a stranger you like their hairstyle? Column positions Blank if Question 0 FTDCPC2F = 95 Blank if Question 0 FTDCPC2F = 96 Blank if Question 0 FTDCPC2F = 97 Blank if Question 0 FTDCPC2F = 98 Blank if question not answered NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 44

48 Form C2F Social Norms Questionnaire cont. 18 FTDSHIRW Wear the same shirt twice in two weeks? Column positions Blank if Question 0 FTDCPC2F = 95 Blank if Question 0 FTDCPC2F = 96 Blank if Question 0 FTDCPC2F = 97 Blank if Question 0 FTDCPC2F = 98 Blank if question not answered 19 FTDMOVE Tell someone the ending of a movie they haven t seen? Column positions Blank if Question 0 FTDCPC2F = 95 Blank if Question 0 FTDCPC2F = 96 Blank if Question 0 FTDCPC2F = 97 Blank if Question 0 FTDCPC2F = 98 Blank if question not answered 20 FTDHUGS Hug a stranger without asking first? Column positions Blank if Question 0 FTDCPC2F = 95 Blank if Question 0 FTDCPC2F = 96 Blank if Question 0 FTDCPC2F = 97 Blank if Question 0 FTDCPC2F = 98 Blank if question not answered NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 45

49 Form C2F Social Norms Questionnaire cont. 21 FTDLOUD Talk out loud during a movie at the theater? Column positions Blank if Question 0 FTDCPC2F = 95 Blank if Question 0 FTDCPC2F = 96 Blank if Question 0 FTDCPC2F = 97 Blank if Question 0 FTDCPC2F = 98 Blank if question not answered 22 FTDLOST Tell a coworker you think they have lost weight? Column positions Blank if Question 0 FTDCPC2F = 95 Blank if Question 0 FTDCPC2F = 96 Blank if Question 0 FTDCPC2F = 97 Blank if Question 0 FTDCPC2F = 98 Blank if question not answered 23 FTDSNTOT SNQ22 Total Score Column positions = Some Scores Missing Blank if Question 0 FTDCPC2F = 95 Blank if Question 0 FTDCPC2F = 96 Blank if Question 0 FTDCPC2F = 97 Blank if Question 0 FTDCPC2F = 98 NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 46

50 Form C2F Social Norms Questionnaire cont. 24 FTDSNTBS SNQ22 Break Score Column positions = Some scores missing Blank if Question 0 FTDCPC2F = 95 Blank if Question 0 FTDCPC2F = 96 Blank if Question 0 FTDCPC2F = 97 Blank if Question 0 FTDCPC2F = FTDSNTOS SNQ22 Overadhere Score Column positions = Some scores missing Blank if Question 0 FTDCPC2F = 95 Blank if Question 0 FTDCPC2F = 96 Blank if Question 0 FTDCPC2F = 97 Blank if Question 0 FTDCPC2F = FTDSNRAT SNQ22 Yes/No Ratio Score Length of field 5 Column positions = Some scores missing or total Yes = 0 or total No = 0 Blank if Question 0 FTDCPC2F = 95 Blank if Question 0 FTDCPC2F = 96 Blank if Question 0 FTDCPC2F = 97 Blank if Question 0 FTDCPC2F = 98 NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 47

51 Form C3F Social Behavior Observer Checklist 1 FTDSELF Was overly self-conscious / embarrassed for self. Column positions t at all 1 = A little bit 2 = Moderately 3 = Severely 1a FTDBADLY Spontaneously mentioned that he/she was performing badly. Column positions = Never 1 = Once 2 = 2-3x 3 = 4+ 1b FTDDEPR Made other self-depreciatory comments. Column positions = Never 1 = Once 2 = 2-3x 3 = 4+ NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 48

52 1c FTDEMOTD Showed emotional distress over his/her performance / cognitive abilities. Column positions = Never 1 = Once 2 = 2-3x 3 = 4+ 2 FTDLSELF Showed too little self-consciousness / embarrassment for self. Column positions t at all 1 = A little bit 2 = Moderately 3 = Severely 2a FTDDISR Disrobed immodestly (took off shoes, belt, pants, etc. lifted shirt, etc.) Column positions = Never 1 = Once 2 = 2-3x 3 = 4+ 2b FTDBELCH Engaged in belching or flatulence, or picked nose without apology. Column positions = Never 1 = Once 2 = 2-3x 3 = 4+ NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 49

53 Form C3F Social Behavior Observer Checklist cont. 2c FTDGIGG Giggled or otherwise made silly, childish comment or noise. Column positions = Never 1 = Once 2 = 2-3x 3 = 4+ 3 FTDPRIV Insensitive to others embarrassment or privacy. Column positions t at all 1 = A little bit 2 = Moderately 3 = Severely 3a FTDNEGAT Insulted or made a negative comment about examiner. Column positions = Never 1 = Once 2 = 2-3x 3 = 4+ 3b FTDECOMM Made an embarrassing comment about examiner. Column positions = Never 1 = Once 2 = 2-3x 3 = 4+ NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 50

54 Form C3F Social Behavior Observer Checklist cont. 3c FTDINAPJ Made an inappropriate or embarrassing joke. Column positions = Never 1 = Once 2 = 2-3x 3 = 4+ 4 FTDFAILA Failed to adapt / defer to structure of testing situation established by examiner. Column positions t at all 1 = A little bit 2 = Moderately 3 = Severely 4a FTDRESIS Resisted redirection while engaging in a verbal monologue. Column positions = Never 1 = Once 2 = 2-3x 3 = 4+ 4b FTDINTER Interrupted examiner. Column positions = Never 1 = Once 2 = 2-3x 3 = 4+ NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 51

55 Form C3F Social Behavior Observer Checklist cont. 4c FTDVERBA Verbalized a desire to leave the evaluation prematurely. Column positions = Never 1 = Once 2 = 2-3x 3 = 4+ 4d FTDPHYSI Physically attempted to leave the evaluation prematurely. Column positions = Never 1 = Once 2 = 2-3x 3 = 4+ 4e FTDTOPIC Failed to maintain topic of discussion, initiated tangent. Column positions = Never 1 = Once 2 = 2-3x 3 = 4+ NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 52

56 Form C3F Social Behavior Observer Checklist cont. 4f FTDPROTO Demanded that test protocol be broken for him/her (e.g., insisted on completing an item after being told to stop, tried to cheat, tried to turn page against examiner s expressed wishes, etc.). Column positions = Never 1 = Once 2 = 2-3x 3 = 4+ 5 FTDPREO Was preoccupied with what time the evaluation had to be finished. Column positions t at all 1 = A little bit 2 = Moderately 3 = Severely 5a FTDFINI Reminded examiner what time evaluation had to be finished. Column positions = Never 1 = Once 2 = 2-3x 3 = 4+ NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 53

57 Form C3F Social Behavior Observer Checklist cont. 6 FTDACTED Acted overly dependent. Column positions t at all 1 = A little bit 2 = Moderately 3 = Severely 6a FTDABS Mentioned caregiver s absence or asked when caregiver would return. Column positions = Never 1 = Once 2 = 2-3x 3 = 4+ 6b FTDFEEDB Asked for feedback on performance. Column positions = Never 1 = Once 2 = 2-3x 3 = 4+ 6c FTDFRUST Showed frustration when examiner would not provide explicit feedback. Column positions = Never 1 = Once 2 = 2-3x 3 = 4+ NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 54

58 Form C3F Social Behavior Observer Checklist cont. 7 FTDANXI Was anxious. Column positions t at all 1 = A little bit 2 = Moderately 3 = Severely 7a FTDNERVO Mentioned being nervous about testing/performance anxiety. Column positions = Never 1 = Once 2 = 2-3x 3 = 4+ 7b FTDNDIAG Mentioned being nervous about diagnosis or prognosis. Column positions = Never 1 = Once 2 = 2-3x 3 = 4+ 8 FTDSTIMB Was stimulus-bound. Column positions t at all 1 = A little bit 2 = Moderately 3 = Severely NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 55

59 Form C3F Social Behavior Observer Checklist cont. 8a FTDSTIME Made stimulus-bound error on testing. Column positions = Never 1 = Once 2 = 2-3x 3 = 4+ 8b FTDOBJEC Picked up object on desk unnecessarily. Column positions = Never 1 = Once 2 = 2-3x 3 = 4+ 8c FTDCIRCU Circumstantial speech; overly focused on details, overly lengthy. Column positions = Never 1 = Once 2 = 2-3x 3 = 4+ 9 FTDPERSE Was perseverative. Column positions t at all 1 = A little bit 2 = Moderately 3 = Severely NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 56

60 Form C3F Social Behavior Observer Checklist cont. 9a FTDREPEA Repeated previous answer on testing. Column positions = Never 1 = Once 2 = 2-3x 3 = 4+ 9b FTDANECD Repeated an anecdote. Column positions = Never 1 = Once 2 = 2-3x 3 = FTDDINIT Showed decreased initiation. Column positions t at all 1 = A little bit 2 = Moderately 3 = Severely 10a FTDDELAY Began response in a notably delayed manner (not due to general slowing). Column positions = Never 1 = Once 2 = 2-3x 3 = 4+ NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 57

61 Form C3F Social Behavior Observer Checklist cont. 10b FTDADDVE Required additional verbal prompting to initiate task. Column positions = Never 1 = Once 2 = 2-3x 3 = FTDFLUCT Showed fluctuating level of cognitive ability through sessions regardless of complexity of material (e.g., was coherent at times and had notable difficulty understanding at other times). Column positions t at all 1 = A little bit 2 = Moderately 3 = Severely 11a FTDLOSTT Lost task set/forgot instructions after performing task correctly. Column positions = Never 1 = Once 2 = 2-3x 3 = 4+ NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 58

62 Form C3F Social Behavior Observer Checklist cont. 11b FTDREPRU Repeated rules to self multiple times during task. Column positions = Never 1 = Once 2 = 2-3x 3 = 4+ 11c FTDTRAIN Lost train of thought during conversation or response (demonstrated thought blocking). Column positions = Never 1 = Once 2 = 2-3x 3 = FTDDISCL Was overly disclosing or inappropriately familiar. Column positions t at all 1 = A little bit 2 = Moderately 3 = Severely 12a FTDSPONT Spontaneously revealed inappropriately personal information concerning self (only). Column positions = Never 1 = Once 2 = 2-3x 3 = 4+ NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 59

63 Form C3F Social Behavior Observer Checklist cont. 12b FTDSPONR Spontaneously revealed inappropriately personal information concerning a relative or friend (can also involve self). Column positions = Never 1 = Once 2 = 2-3x 3 = 4+ 12c FTDSTOOD Stood or leaned too close to examiner (noticeably entered examiner s personal space). Column positions = Never 1 = Once 2 = 2-3x 3 = 4+ 12d FTDTOUCH Touched examiner. Column positions = Never 1 = Once 2 = 2-3x 3 = FTDDSOCI Showed diminished social/emotional engagement. Column positions t at all 1 = A little bit 2 = Moderately 3 = Severely NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 60

64 Form C3F Social Behavior Observer Checklist cont. 14 FTDEXAGG Showed exaggerated/labile emotional reactivity: Column positions t at all 1 = A little bit 2 = Moderately 3 = Severely 15 FTDSBTOT Descriptor Total Score Column positions FTDSBCTO Checklist (Behavior) Score Length of field 3 Column positions FTDLENGT Length of the entire FTLD neuropsychological testing session Length of field 3 Column positions NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 61

65 Form C4F Behavioral Inhibition Scale 0 FTDCPC4F The questionnaire was completed Column positions = Independently by informant, as described in Instructions to the center 1 = Via in-person interview of informant by clinic staff 2 = Via telephone interview of informant by clinic staff 1 FTDWORKU If the subject thinks something unpleasant is going to happen, he/she usually gets pretty "worked up." Column positions = Strongly Disagree 2 = Disagree 3 = Agree 4 = Strongly Agree Blank if question not answered 2 FTDMIST The subject worries about making mistakes. Column positions = Strongly Disagree 2 = Disagree 3 = Agree 4 = Strongly Agree Blank if question not answered NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 62

66 Form C4F Behavioral inhibition scale cont. 3 FTDCRIT Criticism or scolding hurts the subject quite a bit. Column positions = Strongly Disagree 2 = Disagree 3 = Agree 4 = Strongly Agree Blank if question not answered 4 FTDWORR The subject feels pretty worried or upset when he/she thinks somebody is angry at him/her. Column positions = Strongly Disagree 2 = Disagree 3 = Agree 4 = Strongly Agree Blank if question not answered 5 FTDBAD Even if something bad is about to happen to the subject, he/she rarely experiences fear or nervousness. Column positions = Strongly Disagree 2 = Disagree 3 = Agree 4 = Strongly Agree Blank if question not answered NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 63

67 Form C4F Behavioral inhibition scale cont. 6 FTDPOOR The subject feels worried when he/she thinks he/she has done poorly at something. Column positions = Strongly Disagree 2 = Disagree 3 = Agree 4 = Strongly Agree Blank if question not answered 7 FTDFFEAR The subject has very few fears compared to his/her friends. Column positions = Strongly Disagree 2 = Disagree 3 = Agree 4 = Strongly Agree Blank if question not answered 8 FTDBIST BIS Total Score Column positions = Some questions were not answered NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 64

68 Form C5F Interpersonal Reactivity Index 0 FTDCPC5F This questionnaire was completed Column positions = Independently by informant, as described in Instructions to the Center 1 = Via in-person inerview of informant by clinic staff 2 = Via telephone interview of informant by clinic staff 0a FTDINSEX Sex of informant Column positions = Male 2 = Female 0b FTDINFMO Informant s month of birth Column positions b FTDINFYR Informant s year of birth Length of field 4 Column positions NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 65

69 Form C5F Interpersonal reactivity Index cont. 0c FTDINFRE Informant s relationship to subject Column positions = Spouse or spouse equivalent 2 = Child 3 = Daughter- or son-in law 4 = Parent 5 = Sibling 6 = Other (other relative, friend, neighbor, paid caregiver) 1 FTDFEEL The subject shows tender, concerned feelings for people less fortunate than him/her. Column positions (1=Does not describe well through 5=Describes very well) Blank if question not answered 2 FTDDIFF The subject sometimes finds it difficult to see things from the "other guy s" point of view. Column positions (1=Does not describe well through 5=Describes very well) Blank if question not answered 3 FTDSORR Sometimes the subject does NOT feel very sorry for other people when they are having problems. Column positions (1=Does not describe well through 5=Describes very well) Blank if question not answered NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 66

70 Form C5F Interpersonal reactivity Index cont. 4 FTDSIDE The subject tries to look at everybody s side of a disagreement before he/she makes a decision. Column positions (1=Does not describe well through 5=Describes very well) Blank if question not answered 5 FTDADVAN If the subject sees somebody being taken advantage of, the subject feels kind of protective towards him/her. Column positions (1=Does not describe well through 5=Describes very well) Blank if question not answered 6 FTDIMAG The subject is likely to try to understand others better by imaging how things look from their perspective. Column positions (1=Does not describe well through 5=Describes very well) Blank if question not answered 7 FTDMISF Other people s misfortunes do NOT usually disturb the subject a great deal. Column positions (1=Does not describe well through 5=Describes very well) Blank if question not answered NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 67

71 Form C5F Interpersonal reactivity Index cont. 8 FTDWASTE If the subject is sure he/she is right about something, he/she doesn t waste much time listening to other people s arguments. Column positions (1=Does not describe well through 5=Describes very well) Blank if question not answered 9 FTDPITY If the subject sees someone being treated unfairly, the subject doesn t feel much pity for him/her. Column positions (1=Does not describe well through 5=Describes very well) Blank if question not answered 10 FTDQTOUC The subject is often quite touched by things he/she sees happen. Column positions (1=Does not describe well through 5=Describes very well) Blank if question not answered 11 FTDSIDES The subject believes that there are two sides to every question and tries to look at both of them. Column positions (1=Does not describe well through 5=Describes very well) Blank if question not answered NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 68

72 Form C5F Interpersonal reactivity Index cont. 12 FTDSOFTH I would describe the subject as a pretty soft-hearted person. Column positions (1=Does not describe well through 5=Describes very well) Blank if question not answered 13 FTDUPSET If the subject is upset at someone, the subject usually tries to put him/herself in "the other person s shoes" for a while. Column positions (1=Does not describe well through 5=Describes very well) Blank if question not answered 14 FTDCRITI Before criticizing me, the subject is likely to imagine how he/she would feel if he/she were in my place. Column positions (1=Does not describe well through 5=Describes very well) Blank if question not answered 15 FTDIRIEC Empathic Concern Score (EC) Column positions = Some questions not answered NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 69