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).
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 2018-04-02 Form Z1F replaced by Form Z1X Z1F All Numerous data elements added on language of aministration 2016-09-09 New Center codes added All Form header adcid
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
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
Form header 0D ADCID Center ID Column positions 12 13 2 43; 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
Form header 0E PTID ADC Subject ID 0 Column positions 15 24 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 26 27 1 12 Comment Form date cannot precede March 1, 2015. 0G VISITDAY Form date day Column positions 29 30 1 31 Comment Form date cannot precede March 1, 2015. 0H VISITYR Form date year Length of field 4 Column positions 32 35 2012 to present year Comment Form date cannot precede March 1, 2015. NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 3
Form header 0I VISITNUM ADC visit number Length of field 3 Column positions 37 39 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 41 43 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
Form Z1X Form Checklist 1a LANGA1 A1 Subject Demographics language Column positions 45-45 Num 1 = English 2 = Spanish 2a LANGA2 A2 Co-participant Demographics language Column positions 47-47 Num 1 = English 2 = Spanish Blank if #2b A2SUB = 0 (No) 2b A2SUB A2 Co-participant Demographics submitted Column positions 49-49 Num 2c A2NOT If A2 not submitted, specify reason Column positions 51-52 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
Form Z1X Form Checklist Cont. 3a LANGA3 A3 Subject Family History language Column positions 54-54 Num 1 = English 2 = Spanish Blank if #3b A3SUB = 0 (No) 3b A3SUB A3 Subject Family History submitted Column positions 56-56 Num 3c A3NOT If A3 not submitted, specify reason Column positions 58-59 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 61-61 Num 1 = English 2 = Spanish Blank if #4b A4SUB = 0 (No) NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 6
Form Z1X Form Checklist Cont. 4b A4SUB A4 Subject Medications submitted Column positions 63-63 Num 4c A4NOT If A4 not submitted, specify reason Column positions 65-66 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 68-68 Num 1 = English 2 = Spanish 6a LANGB1 B1 Evaluation Form: Physical language Column positions 70-70 Num 1 = English 2 = Spanish Blank if #6b B1SUB = 0 (No) NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 7
Form Z1X Form Checklist Cont. 6b B1SUB B1 Evaluation Form: Physical submitted Column positions 72-72 Num 6c B1NOT If B1 not submitted, specify reason Column positions 74-75 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 77-77 Num 1 = English 2 = Spanish 8a LANGB5 B5 Behavioral Assessment: NPI-Q language Column positions 79-79 Num 1 = English 2 = Spanish Blank if #8b B5SUB = 0 (No) NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 8
Form Z1X Form Checklist Cont. 8b B5SUB B5 Behavioral Assessment: NPI-Q submitted Column positions 81-81 Num 8c B5NOT If B5 not submitted, specify reason Column positions 83-84 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 86-86 Num 1 = English 2 = Spanish Blank if #9b B6SUB = 0 (No) 9b B6SUB B6 Behavioral Assessment: GDS submitted Column positions 88-88 Num NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 9
Form Z1X Form Checklist Cont. 9c B6NOT If B6 not submitted, specify reason Column positions 90-91 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 93-93 Num 1 = English 2 = Spanish Blank if #10b B7SUB = 0 (No) 10b B7SUB B7 Functional Assessment: FAS submitted Column positions 95-95 Num 10c B7NOT If B7 not submitted, specify reason Column positions 97-98 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
Form Z1X Form Checklist Cont. 11a LANGB8 B8 Neurological Examination Findings language Column positions 100-100 Num 1 = English 2 = Spanish 12a LANGB9 B9 Clinician Judgment of Symptoms language Column positions 102-102 Num 1 = English 2 = Spanish 13a LANGC2 C2 Neurological Battery Scores language Column positions 104-104 Num 1 = English 2 = Spanish 14a LANGD1 D1 Clinician Diagnosis language Column positions 106-106 Num 1 = English 2 = Spanish NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 11
Form Z1X Form Checklist Cont. 15a LANGD2 D2 Clinician-assessed Medical Conditions language Column positions 108-108 Num 1 = English 2 = Spanish 16a LANGA3A A3A Record of consent for biologic specimen use language Column positions 110-110 Num 1 = English 2 = Spanish Blank if #16b FTDA3AFS = 0 (No) 16b FTDA3AFS A3A Record of consent for biologic specimen use submitted Column positions 112-112 Num 16c FTDA3AFR If A3A not submitted, specify reason Column positions 114-115 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
Form Z1X Form Checklist Cont. 17a LANGB3F B3F Supplemental UPDRS language Column positions 117-117 Num 1 = English 2 = Spanish 18a LANGB9F B9F Clinical PPA and bvftd Features language Column positions 119-119 Num 1 = English 2 = Spanish 19a LANGC1F C1F Neuropsychological Battery Summary Scores language Column positions 121-121 Num 1 = English 2 = Spanish 20a LANGC2F C2F Social Norms Questionnaire language Column positions 123-123 Num 1 = English 2 = Spanish NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 13
Form Z1X Form Checklist Cont. 21a LANGC3F C3F Social Behavior Observer Checklist language Column positions 125-125 Num 1 = English 2 = Spanish 22a LANGC4F C4F Behavioral Inhibition Scale language Column positions 127-127 Num 1 = English 2 = Spanish Blank if #22b FTDC4FS = 0 (No) 22b FTDC4FS C4F Behavioral Inhibition Scale submitted Column positions 129-129 Num 22c FTDC4FR If C4F not submitted, specify reason Column positions 131-132 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
Form Z1X Form Checklist Cont. 23a LANGC5F C5F Interpersonal Reactivity Index language Column positions 134-134 Num 1 = English 2 = Spanish Blank if #23b FTDC5FS = 0 (No) 23b FTDC5FS C5F Interpersonal Reactivity Index submitted Column positions 136-136 Num 23c FTDC5FR If C5F not submitted, specify reason Column positions 138-139 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 141-141 Num 1 = English 2 = Spanish Blank if #24b FTDC6FS = 0 (No) NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 15
Form Z1X Form Checklist Cont. 24b FTDC6FS C6F Revised self-monitoring scale submitted Column positions 143-143 Num 24c FTDC6FR If C6F not submitted, specify reason Column positions 145-146 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 148-148 Num 1 = English 2 = Spanish 26a LANGE3F E3F Imaging in Diagnosis language Column positions 150-150 Num 1 = English 2 = Spanish NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 16
Form Z1X Form Checklist Cont. 27a LANGCLS CLS Language language Column positions 152-152 Num 1 = English 2 = Spanish Blank if #27b CLSSUB = 0 (No) 27b CLSSUB CLS Subject Language History submitted Column positions 154-154 Num NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 17
Form A3a Record of Consent for Biologic Specimen Use 1 FTDRELCO What relative s consent is being recorded on this form? Column positions 45 45 1 = Mother 2 = Father 3 = Sibling 4 = Child 1 FTDSIBBY Sibling s birth year Length of field 4 Column positions 47 50 1885 2000 Blank if Question 1 FTDRELCO 3 (Sibling) 1 FTDCHDBY Child s birth year Length of field 4 Column positions 52 55 1920 2000 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 57 57 NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 18
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 59 59 1c 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 61 61 NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 19
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 45 45 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 47 47 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 49 49 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
Form B3F Supplemental UPDRS cont. B1 FTDGSEV Column positions 51 51 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 53 112 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 114 114 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
Form B3F Supplemental UPDRS cont. B2a Length of field 60 FTDGTYPG Column positions 116 175 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 177 236 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
Form B9F Clinical PPA and bvftd Features 1 FTDPPASL Column positions 45 45 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 47 47 0 = 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 49 49 0 = 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
Form B9F Clinical PPA and bvftd Features cont. 4 FTDPPASW Column positions 51 51 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 53 53 0 = 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 55 55 0 = 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
Form B9F Clinical PPA and bvftd Features cont. 7 FTDPPAEH Column positions 57 57 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 59 59 0 = 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 61 61 0 = 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
Form B9F Clinical PPA and bvftd Features cont. 10 FTDPPASR Column positions 63 63 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 65 65 0 = 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 67 67 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
Form B9F Clinical PPA and bvftd Features cont. 13 FTDCPPAS Column positions 69 69 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 15 21 is Definitely present.) Column positions 71 71 Skips If Question 14 FTDBVCLN = 0 (No), then skip to Question 23 15 FTDBVDIS bvftd features: Disinhibition Column positions 73 73 0 = 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
Form B9F Clinical PPA and bvftd Features cont. 16 FTDBVAPA Column positions 75 75 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 77 77 0 = 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 79 79 0 = 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
Form B9F Clinical PPA and bvftd Features cont. 19 FTDBVHYP Column positions 81 81 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 83 83 0 = 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 85 85 0 = 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
Form B9F Clinical PPA and bvftd Features cont. 22 FTDBVFT Column positions 87 87 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 89 89 Skips If Question 23 FTDEMGPV = 1 (Yes), then skip to Question 25 24 FTDEMGPY Has an EMG been performed in the past year? Column positions 91 91 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
Form B9F Clinical PPA and bvftd Features cont. 25 FTDEMGMN Column positions 93 93 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 95 95 1 = 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
Form C1F Neuropsychological Battery Summary Scores 1a FTDWORRC Total completely accurate words (0-15) Column positions 45 46 0 15 95 = 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 48 49 0 15 Blank if Question 1a FTDWORRC = 95-98 1c FTDWORRR Total other phonologically related words or nonword errors (0 15) Column positions 51 52 0 15 Blank if Question 1a FTDWORRC = 95-98 NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 32
Form C1F Neuropsychological Battery Summary Scores cont. 1d FTDWORIC Total completely accurate words (0-15) Column positions 54 55 0 15 Blank if Question 1a FTDWORRC = 95-98 1e FTDWORIS Total semantically related inaccurate words (0-15) Column positions 57 58 0 15 Blank if Question 1a FTDWORRC = 95-98 1f FTDWORIR Total words that are regularized (read using phonics, e.g., sew read as sue) Column positions 60 61 0 15 Blank if Question 1a FTDWORRC = 95-98 1g FTDWORIP Total other phonologically related words or nonword errors (0-15) Column positions 63 64 0 15 Blank if Question 1a FTDWORRC = 95-98 NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 33
Form C1F Neuropsychological Battery Summary Scores cont. 2a FTDSEMMT Column positions 66 67 Total correct word-picture matches(0-20) 0 20 95 = 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 69 70 0 8 95 = 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 72 73 0 8 Blank if Question 3a FTDSEMAA = 95-98 NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 34
Form C1F Neuropsychological Battery Summary Scores cont. 3c FTDSEMSU Sum of all correct associations (Semantic Associates Test total score) (0-16) Column positions 75 76 0 16 Blank if Question 3a FTDSEMAA = 95-98 4a FTDANASW Correct subject who-questions (0-5) Column positions 78 79 0 5 95 = 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 81 82 0 5 Blank if Question 4a FTDANASW = 95-98 4c FTDANATS Total score: sum of all correct questions (0-10) Column positions 84 85 0 10 Blank if Question 4a FTDANASW = 95-98 NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 35
Form C1F Neuropsychological Battery Summary Scores cont. 5a FTDSENAS Number of completely accurate sentences (0-5) Column positions 87 88 0 5 95 = 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 90 91 0 37 Blank if Question 5a FTDSENAS = 95-98 5c FTDSENSR Total number of semantically related or unrelated incorrect real words (0-20) Column positions 93 94 0 20 Blank if Question 5a FTDSENAS = 95-98 5d FTDSENPR Total number of phonologically related words or nonword errors (0-20) Column positions 96 97 0 20 Blank if Question 5a FTDSENAS = 95-98 NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 36
Form C1F Neuropsychological Battery Summary Scores cont. 6a FTDNOUNC Total nouns correct (0-16) Column positions 99 100 0 16 95 = 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 102 103 0 16 Blank if Question 6a FTDNOUNC = 95-98 6c FTDRATIO Noun-to-verb ratio (total nouns correct/total verbs correct) Length of field 5 Column positions 105 109 Blank if Question 6a FTDNOUNC = 95-98 7a FTDREAAS Number of completely accurate sentences (0-5) Column positions 111 112 0 5 95 = 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
Form C1F Neuropsychological Battery Summary Scores cont. 7b FTDREAOS Total number of words omitted from sentence (0-37) Column positions 114 115 0 37 Blank if Question 7a FTDREAAS = 95-98 7c FTDREASR Total number of semantically related or unrelated incorrect real words (0-20) Column positions 117 118 0 20 Blank if Question 7a FTDREAAS = 95-98 7d FTDREAPR Total number of phonologically related words or nonword errors (0-20) Column positions 120 121 0 20 Blank if Question 7a FTDREAAS = 95-98 NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 38
Form C2F Social Norms Questionnaire 0 FTDCPC2F Reason form not completed Column positions 45 46 95 = 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 48 48 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 50 50 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
Form C2F Social Norms Questionnaire cont. 3 FTDNOSE Blow your nose in public? Column positions 52 52 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 54 54 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 56 56 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
Form C2F Social Norms Questionnaire cont. 6 FTDCUT Cut in line if you are in a hurry? Column positions 58 58 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 60 60 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 62 62 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
Form C2F Social Norms Questionnaire cont. 9 FTDTELLA Tell a coworker your age? Column positions 64 64 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 66 66 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 68 68 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
Form C2F Social Norms Questionnaire cont. 12 FTDSHIRT Wear the same shirt every day? Column positions 70 70 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 72 72 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 74 74 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
Form C2F Social Norms Questionnaire cont. 15 FTDOVER Tell a coworker you think they are overweight? Column positions 76 76 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 78 78 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 80 80 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
Form C2F Social Norms Questionnaire cont. 18 FTDSHIRW Wear the same shirt twice in two weeks? Column positions 82 82 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 84 84 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 86 86 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
Form C2F Social Norms Questionnaire cont. 21 FTDLOUD Talk out loud during a movie at the theater? Column positions 88 88 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 90 90 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 92 93 0 22 88 = 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
Form C2F Social Norms Questionnaire cont. 24 FTDSNTBS SNQ22 Break Score Column positions 95 96 0 12 88 = 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 25 FTDSNTOS SNQ22 Overadhere Score Column positions 98 99 0 10 88 = 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 26 FTDSNRAT SNQ22 Yes/No Ratio Score Length of field 5 Column positions 101 105 0 22 88.88 = 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
Form C3F Social Behavior Observer Checklist 1 FTDSELF Was overly self-conscious / embarrassed for self. Column positions 45 45 t at all 1 = A little bit 2 = Moderately 3 = Severely 1a FTDBADLY Spontaneously mentioned that he/she was performing badly. Column positions 47 47 0 = Never 1 = Once 2 = 2-3x 3 = 4+ 1b FTDDEPR Made other self-depreciatory comments. Column positions 49 49 0 = Never 1 = Once 2 = 2-3x 3 = 4+ NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 48
1c FTDEMOTD Showed emotional distress over his/her performance / cognitive abilities. Column positions 51 51 0 = Never 1 = Once 2 = 2-3x 3 = 4+ 2 FTDLSELF Showed too little self-consciousness / embarrassment for self. Column positions 53 53 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 55 55 0 = Never 1 = Once 2 = 2-3x 3 = 4+ 2b FTDBELCH Engaged in belching or flatulence, or picked nose without apology. Column positions 57 57 0 = Never 1 = Once 2 = 2-3x 3 = 4+ NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 49
Form C3F Social Behavior Observer Checklist cont. 2c FTDGIGG Giggled or otherwise made silly, childish comment or noise. Column positions 59 59 0 = Never 1 = Once 2 = 2-3x 3 = 4+ 3 FTDPRIV Insensitive to others embarrassment or privacy. Column positions 61 61 t at all 1 = A little bit 2 = Moderately 3 = Severely 3a FTDNEGAT Insulted or made a negative comment about examiner. Column positions 63 63 0 = Never 1 = Once 2 = 2-3x 3 = 4+ 3b FTDECOMM Made an embarrassing comment about examiner. Column positions 65 65 0 = Never 1 = Once 2 = 2-3x 3 = 4+ NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 50
Form C3F Social Behavior Observer Checklist cont. 3c FTDINAPJ Made an inappropriate or embarrassing joke. Column positions 67 67 0 = Never 1 = Once 2 = 2-3x 3 = 4+ 4 FTDFAILA Failed to adapt / defer to structure of testing situation established by examiner. Column positions 69 69 t at all 1 = A little bit 2 = Moderately 3 = Severely 4a FTDRESIS Resisted redirection while engaging in a verbal monologue. Column positions 71 71 0 = Never 1 = Once 2 = 2-3x 3 = 4+ 4b FTDINTER Interrupted examiner. Column positions 73 73 0 = Never 1 = Once 2 = 2-3x 3 = 4+ NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 51
Form C3F Social Behavior Observer Checklist cont. 4c FTDVERBA Verbalized a desire to leave the evaluation prematurely. Column positions 75 75 0 = Never 1 = Once 2 = 2-3x 3 = 4+ 4d FTDPHYSI Physically attempted to leave the evaluation prematurely. Column positions 77 77 0 = Never 1 = Once 2 = 2-3x 3 = 4+ 4e FTDTOPIC Failed to maintain topic of discussion, initiated tangent. Column positions 79 79 0 = Never 1 = Once 2 = 2-3x 3 = 4+ NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 52
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 81 81 0 = Never 1 = Once 2 = 2-3x 3 = 4+ 5 FTDPREO Was preoccupied with what time the evaluation had to be finished. Column positions 83 83 t at all 1 = A little bit 2 = Moderately 3 = Severely 5a FTDFINI Reminded examiner what time evaluation had to be finished. Column positions 85 85 0 = Never 1 = Once 2 = 2-3x 3 = 4+ NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 53
Form C3F Social Behavior Observer Checklist cont. 6 FTDACTED Acted overly dependent. Column positions 87 87 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 89 89 0 = Never 1 = Once 2 = 2-3x 3 = 4+ 6b FTDFEEDB Asked for feedback on performance. Column positions 91 91 0 = Never 1 = Once 2 = 2-3x 3 = 4+ 6c FTDFRUST Showed frustration when examiner would not provide explicit feedback. Column positions 93 93 0 = Never 1 = Once 2 = 2-3x 3 = 4+ NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 54
Form C3F Social Behavior Observer Checklist cont. 7 FTDANXI Was anxious. Column positions 95 95 t at all 1 = A little bit 2 = Moderately 3 = Severely 7a FTDNERVO Mentioned being nervous about testing/performance anxiety. Column positions 97 97 0 = Never 1 = Once 2 = 2-3x 3 = 4+ 7b FTDNDIAG Mentioned being nervous about diagnosis or prognosis. Column positions 99 99 0 = Never 1 = Once 2 = 2-3x 3 = 4+ 8 FTDSTIMB Was stimulus-bound. Column positions 101 101 t at all 1 = A little bit 2 = Moderately 3 = Severely NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 55
Form C3F Social Behavior Observer Checklist cont. 8a FTDSTIME Made stimulus-bound error on testing. Column positions 103 103 0 = Never 1 = Once 2 = 2-3x 3 = 4+ 8b FTDOBJEC Picked up object on desk unnecessarily. Column positions 105 105 0 = Never 1 = Once 2 = 2-3x 3 = 4+ 8c FTDCIRCU Circumstantial speech; overly focused on details, overly lengthy. Column positions 107 107 0 = Never 1 = Once 2 = 2-3x 3 = 4+ 9 FTDPERSE Was perseverative. Column positions 109 109 t at all 1 = A little bit 2 = Moderately 3 = Severely NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 56
Form C3F Social Behavior Observer Checklist cont. 9a FTDREPEA Repeated previous answer on testing. Column positions 111 111 0 = Never 1 = Once 2 = 2-3x 3 = 4+ 9b FTDANECD Repeated an anecdote. Column positions 113 113 0 = Never 1 = Once 2 = 2-3x 3 = 4+ 10 FTDDINIT Showed decreased initiation. Column positions 115 115 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 117 117 0 = Never 1 = Once 2 = 2-3x 3 = 4+ NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 57
Form C3F Social Behavior Observer Checklist cont. 10b FTDADDVE Required additional verbal prompting to initiate task. Column positions 119 119 0 = Never 1 = Once 2 = 2-3x 3 = 4+ 11 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 121 121 t at all 1 = A little bit 2 = Moderately 3 = Severely 11a FTDLOSTT Lost task set/forgot instructions after performing task correctly. Column positions 123 123 0 = Never 1 = Once 2 = 2-3x 3 = 4+ NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 58
Form C3F Social Behavior Observer Checklist cont. 11b FTDREPRU Repeated rules to self multiple times during task. Column positions 125 125 0 = Never 1 = Once 2 = 2-3x 3 = 4+ 11c FTDTRAIN Lost train of thought during conversation or response (demonstrated thought blocking). Column positions 127 127 0 = Never 1 = Once 2 = 2-3x 3 = 4+ 12 FTDDISCL Was overly disclosing or inappropriately familiar. Column positions 129 129 t at all 1 = A little bit 2 = Moderately 3 = Severely 12a FTDSPONT Spontaneously revealed inappropriately personal information concerning self (only). Column positions 131 131 0 = Never 1 = Once 2 = 2-3x 3 = 4+ NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 59
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 133 133 0 = 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 135 135 0 = Never 1 = Once 2 = 2-3x 3 = 4+ 12d FTDTOUCH Touched examiner. Column positions 137 137 0 = Never 1 = Once 2 = 2-3x 3 = 4+ 13 FTDDSOCI Showed diminished social/emotional engagement. Column positions 139 139 t at all 1 = A little bit 2 = Moderately 3 = Severely NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 60
Form C3F Social Behavior Observer Checklist cont. 14 FTDEXAGG Showed exaggerated/labile emotional reactivity: Column positions 141 141 t at all 1 = A little bit 2 = Moderately 3 = Severely 15 FTDSBTOT Descriptor Total Score Column positions 143 144 0 42 16 FTDSBCTO Checklist (Behavior) Score Length of field 3 Column positions 146 148 0 105 17 FTDLENGT Length of the entire FTLD neuropsychological testing session Length of field 3 Column positions 150 152 20 240 NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 61
Form C4F Behavioral Inhibition Scale 0 FTDCPC4F The questionnaire was completed Column positions 45 45 0 = 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 47 47 1 = Strongly Disagree 2 = Disagree 3 = Agree 4 = Strongly Agree Blank if question not answered 2 FTDMIST The subject worries about making mistakes. Column positions 49 49 1 = 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
Form C4F Behavioral inhibition scale cont. 3 FTDCRIT Criticism or scolding hurts the subject quite a bit. Column positions 51 51 1 = 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 53 53 1 = 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 55 55 1 = 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
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 57 57 1 = 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 59 59 1 = Strongly Disagree 2 = Disagree 3 = Agree 4 = Strongly Agree Blank if question not answered 8 FTDBIST BIS Total Score Column positions 61 62 7 28 88 = Some questions were not answered NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 64
Form C5F Interpersonal Reactivity Index 0 FTDCPC5F This questionnaire was completed Column positions 45 45 0 = 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 47 47 1 = Male 2 = Female 0b FTDINFMO Informant s month of birth Column positions 49 50 1 12 0b FTDINFYR Informant s year of birth Length of field 4 Column positions 52 55 1900 1990 NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 65
Form C5F Interpersonal reactivity Index cont. 0c FTDINFRE Informant s relationship to subject Column positions 57 57 1 = 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 59 59 1 5 (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 61 61 1 5 (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 63 63 1 5 (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
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 65 65 1 5 (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 67 67 1 5 (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 69 69 1 5 (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 71 71 1 5 (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
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 73 73 1 5 (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 75 75 1 5 (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 77 77 1 5 (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 79 79 1 5 (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
Form C5F Interpersonal reactivity Index cont. 12 FTDSOFTH I would describe the subject as a pretty soft-hearted person. Column positions 81 81 1 5 (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 83 83 1 5 (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 85 85 1 5 (1=Does not describe well through 5=Describes very well) Blank if question not answered 15 FTDIRIEC Empathic Concern Score (EC) Column positions 87 88 7 35 88 = Some questions not answered NACC UDS FTLD Module Data Element Dictionary IVP (, March 2015) Page 69