NACC UNIFORM data set FTLD MODULE Data Template for IVP Version 3.0, 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 Data Template 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 Z1 replaced by Form Z1X Z1 All Numerous variables added on language of administration
FTLD Module to the Uniform Data Set Data Template for the Initial Visit Packet Preface This template is designed to help the Data Cores at the Alzheimer s Disease Centers develop software for submitting FTLD data to NACC. In this template, data elements are organized by form and, within the form, by item number. For each data element, the template lists the element name, element type, columns for ASCII file submission, and item number. This template is needed only for file submission. Centers using web data entry will not need this template. A more detailed description of each data element is found in the Data Element Dictionary for the FTLD Initial Visit Packet. Please note: The first 10 data elements are the same for each form, and hence for each template. These elements which are required are shaded on the template. For ASCII fixed-format files, exactly one blank space is required between the data fields of adjacent variables. Although a data field may in some cases contain one or more blanks, the required separator blank must still be included. Column assignments and column alignment must be maintained. For SAS files, all data elements must be present in the file. For tab-delimited files, all fields must be separated by one tab. For comma-delimited files, all fields must be separated by one comma. Fields containing commas must be contained in quotation marks. In some cases, the item number shown in the template does not appear in the form. This is true for most Other (specify) text items and dates.
Coding for form header (first 10 data elements on each form) PACKET = IF (The letter I, for the Initial Visit FTLD Module) FORMID = Form ID (I.e., Z1F, A3A, A3F, etc.) FORMVER = 3 Although this is the second version of the FTLD Module, the FORMVER is 3 because it was created to be used with Version 3 of the UDS. By similar reasoning, FORMVER for the first version of the FTLD Module was 2, as it was created to be used with UDS Version 2. ADCID = Center ID The same number used in the MDS and NP data for your Center; see the Data Element Dictionary for the FTLD Module or the UDS for a list of Center IDs. PTID = Patient ID Follow your Center s patient ID scheme. For each subject, patient ID: must be unique within the data set from your Center no duplicate Patient IDs are permitted; must be the same for each visit in the FTLD Module; and must be the same PTID used for that subject in all the NACC databases (UDS, MDS, and NP). PTID cannot be changed once it has been assigned by your Center. Because this is a character field, you must include or exclude leading zeros to match ID numbers across all data sets. VISITMO VISITDAY = Actual date of the interview; cannot precede 03/01/2015 VISITYR VISITNUM = Visit ID Assigned by your Center; need not start with 1 INITIALS = Examiner s initials (Initials of the person conducting the interview)
Form Z1X Form Checklist 3 41 43 INITIALS C 1 45 LANGA1 N 1a 1 47 LANGA2 N 2a 1 49 A2SUB N 2b 2 51-52 A2NOT N 2c 1 54 LANGA3 N 3a 1 56 A3SUB N 3b 2 58-59 A3NOT N 3c 1 61 LANGA4 N 4a 1 63 A4SUB N 4b 2 65-66 A4NOT N 4c 1 68 LANGA5 N 5a 1 70 LANGB1 N 6a 1 72 B1SUB N 6b 2 74-75 B1NOT N 6c 1 77 LANGB4 N 7a 1 79 LANGB5 N 8a 1 81 B5SUB N 8b 2 83-84 B5NOT N 8c 1 86 LANGB6 N 9a 1 88 B6SUB N 9b NACC UDS FTLD Data Template IVP (Version 3, March 2015) Page 1
2 90-91 B6NOT N 9c 1 93 LANGB7 N 10a 1 95 B7SUB N 10b 2 97-98 B7NOT N 10c 1 100 LANGB8 N 11a 1 102 LANGB9 N 12a 1 104 LANGC2 N 13a 1 106 LANGD1 N 14a 1 108 LANGD2 N 15a 1 110 LANGA3A N 16a 1 112 FTDA3AFS N 16b 2 114-115 FTDA3AFR N 16c 1 117 LANGB3F N 17a 1 119 LANGB9F N 18a 1 121 LANGC1F N 19a 1 123 LANGC2F N 20a 1 125 LANGC3F N 21a 1 127 LANGC4F N 22a 1 129 FTDC4FS N 22b 2 131-132 FTDC4FR N 22c 1 134 LANGC5F N 23a 1 136 FTDC5FS N 23b 2 138-139 FTDC5FR N 23c 1 141 LANGC6F N 24a 1 143 FTDC6FS N 24b 2 145-146 FTDC6FR N 24c 1 148 LANGE2F N 25a 1 150 LANGE3F N 26a 1 152 LANGCLS N 27a 1 154 CLSSUB N 27b NACC UDS FTLD Data Template IVP (Version 3, March 2015) Page 2
Form A3a Record of Consent for Biologic Specimen Use 1 45 FTDRELCO N 1 4 47 50 FTDSIBBY N 1 4 52 55 FTDCHDBY N 1 1 57 FTDSTORE N 1a 1 59 FTDSLEAR N 1b 1 61 FTDCOMME N 1c NACC UDS FTLD Data Template IVP (Version 3, March 2015) Page 3
Form B3F Supplemental UPDRS 1 45 FTDLTFAS N A1 1 47 FTDLIMB N A2 1 49 FTDBULB N A3 1 51 FTDGSEV N B1 60 53 112 FTDGSEVX C B1a 1 114 FTDGTYP N B2 60 116 175 FTDGTYPG C B2a 60 177 236 FTDGTYPX C B2b NACC UDS FTLD Data Template IVP (Version 3, March 2015) Page 4
Form B9F Clinical PPA and bvftd Features 1 45 FTDPPASL N 1 1 47 FTDPPAPO N 2 1 49 FTDPPAIW N 3 1 51 FTDPPASW N 4 1 53 FTDPPAPK N 5 1 55 FTDPPAGS N 6 1 57 FTDPPAEH N 7 1 59 FTDPPACS N 8 1 61 FTDPPASS N 9 1 63 FTDPPASR N 10 1 65 FTDPPASD N 11 1 67 FTDCPPA N 12 1 69 FTDCPPAS N 13 1 71 FTDBVCLN N 14 1 73 FTDBVDIS N 15 1 75 FTDBVAPA N 16 1 77 FTDBVLOS N 17 1 79 FTDBVRIT N 18 1 81 FTDBVHYP N 19 1 83 FTDBVNEU N 20 1 85 FTDBVIDL N 21 1 87 FTDBVFT N 22 1 89 FTDEMGPV N 23 1 91 FTDEMGPY N 24 1 93 FTDEMGMN N 25 1 95 FTDPABVF N 26 NACC UDS FTLD Data Template IVP (Version 3, March 2015) Page 5
Form C1F Neuropsychological Battery Summary Scores 2 45 46 FTDWORRC N 1a 2 48 49 FTDWORRS N 1b 2 51 52 FTDWORRR N 1c 2 54 55 FTDWORIC N 1d 2 57 58 FTDWORIS N 1e 2 60 61 FTDWORIR N 1f 2 63 64 FTDWORIP N 1g 2 66 67 FTDSEMMT N 2a 2 69 70 FTDSEMAA N 3a 2 72 73 FTDSEMTA N 3b 2 75 76 FTDSEMSU N 3c 2 78 79 FTDANASW N 4a 2 81 82 FTDANAOW N 4b 2 84 85 FTDANATS N 4c 2 87 88 FTDSENAS N 5a 2 90 91 FTDSENOS N 5b 2 93 94 FTDSENSR N 5c 2 96 97 FTDSENPR N 5d 2 99 100 FTDNOUNC N 6a 2 102 103 FTDVERBC N 6b 5 105 109 FTDRATIO N 6c 2 111 112 FTDREAAS N 7a 2 114 115 FTDREAOS N 7b 2 117 118 FTDREASR N 7c 2 120 121 FTDREAPR N 7d NACC UDS FTLD Data Template IVP (Version 3, March 2015) Page 6
Form C2F Social Norms Questionnaire 2 45 46 FTDCPC2F N 0 1 48 FTDHAIRD N 1 1 50 FTDSPIT N 2 1 52 FTDNOSE N 3 1 54 FTDCOAGE N 4 1 56 FTDCRY N 5 1 58 FTDCUT N 6 1 60 FTDYTRIP N 7 1 62 FTDEATP N 8 1 64 FTDTELLA N 9 1 66 FTDOPIN N 10 1 68 FTDLAUGH N 11 1 70 FTDSHIRT N 12 1 72 FTDKEEPM N 13 1 74 FTDPICKN N 14 1 76 FTDOVER N 15 1 78 FTDEATR N 16 1 80 FTDHAIRL N 17 1 82 FTDSHIRW N 18 1 84 FTDMOVE N 19 1 86 FTDHUGS N 20 1 88 FTDLOUD N 21 1 90 FTDLOST N 22 2 92 93 FTDSNTOT N 23 2 95 96 FTDSNTBS N 24 2 98 99 FTDSNTOS N 25 5 101 105 FTDSNRAT N 26 NACC UDS FTLD Data Template IVP (Version 3, March 2015) Page 7
Form C3F Social Behavior Observer Checklist 1 45 FTDSELF N 1 1 47 FTDBADLY N 1a 1 49 FTDDEPR N 1b 1 51 FTDEMOTD N 1c 1 53 FTDLSELF N 2 1 55 FTDDISR N 2a 1 57 FTDBELCH N 2b 1 59 FTDGIGG N 2c 1 61 FTDPRIV N 3 1 63 FTDNEGAT N 3a 1 65 FTDECOMM N 3b 1 67 FTDINAPJ N 3c 1 69 FTDFAILA N 4 1 71 FTDRESIS N 4a 1 73 FTDINTER N 4b 1 75 FTDVERBA N 4c 1 77 FTDPHYSI N 4d 1 79 FTDTOPIC N 4e 1 81 FTDPROTO N 4f 1 83 FTDPREO N 5 1 85 FTDFINI N 5a 1 87 FTDACTED N 6 1 89 FTDABS N 6a 1 91 FTDFEEDB N 6b NACC UDS FTLD Data Template IVP (Version 3, March 2015) Page 8
Form C3F SOCIAL behavior observer checklist cont. 1 93 FTDFRUST N 6c 1 95 FTDANXI N 7 1 97 FTDNERVO N 7a 1 99 FTDNDIAG N 7b 1 101 FTDSTIMB N 8 1 103 FTDSTIME N 8a 1 105 FTDOBJEC N 8b 1 107 FTDCIRCU N 8c 1 109 FTDPERSE N 9 1 111 FTDREPEA N 9a 1 113 FTDANECD N 9b 1 115 FTDDINIT N 10 1 117 FTDDELAY N 10a 1 119 FTDADDVE N 10b 1 121 FTDFLUCT N 11 1 123 FTDLOSTT N 11a 1 125 FTDREPRU N 11b 1 127 FTDTRAIN N 11c 1 129 FTDDISCL N 12 1 131 FTDSPONT N 12a 1 133 FTDSPONR N 12b 1 135 FTDSTOOD N 12c 1 137 FTDTOUCH N 12d 1 139 FTDDSOCI N 13 1 141 FTDEXAGG N 14 2 143 144 FTDSBTOT N 15 3 146 148 FTDSBCTO N 16 3 150 152 FTDLENGT N 17 NACC UDS FTLD Data Template IVP (Version 3, March 2015) Page 9
Form C4F Behavioral Inhibition Scale 1 45 FTDCPC4F N 0 1 47 FTDWORKU N 1 1 49 FTDMIST N 2 1 51 FTDCRIT N 3 1 53 FTDWORR N 4 1 55 FTDBAD N 5 1 57 FTDPOOR N 6 1 59 FTDFFEAR N 7 2 61 62 FTDBIST N 8 NACC UDS FTLD Data Template IVP (Version 3, March 2015) Page 10
Form C5F Interpersonal Reactivity Index 1 45 FTDCPC5F N 0 1 47 FTDINSEX N 0a 2 49 50 FTDINFMO N 0b 4 52 55 FTDINFYR N 0b 1 57 FTDINFRE N 0c 1 59 FTDFEEL N 1 1 61 FTDDIFF N 2 1 63 FTDSORR N 3 1 65 FTDSIDE N 4 1 67 FTDADVAN N 5 1 69 FTDIMAG N 6 1 71 FTDMISF N 7 1 73 FTDWASTE N 8 1 75 FTDPITY N 9 1 77 FTDQTOUC N 10 1 79 FTDSIDES N 11 1 81 FTDSOFTH N 12 1 83 FTDUPSET N 13 1 85 FTDCRITI N 14 2 87 88 FTDIRIEC N 15 2 90 91 FTDIRIPT N 16 NACC UDS FTLD Data Template IVP (Version 3, March 2015) Page 11
Form C6F Revised Self-monitoring Scale 1 45 FTDCPC6F N 0 1 47 FTDALTER N 1 1 49 FTDEMOT N 2 1 51 FTDACROS N 3 1 53 FTDCONV N 4 1 55 FTDINTUI N 5 1 57 FTDJOKE N 6 1 59 FTDIMAGP N 7 1 61 FTDINAPP N 8 1 63 FTDCHBEH N 9 1 65 FTDADBEH N 10 1 67 FTDLYING N 11 1 69 FTDGOODF N 12 1 71 FTDREGUL N 13 2 73 74 FTDSMSCR N 14 2 76 77 FTDSPSCR N 15 2 79 80 FTDRSMST N 16 NACC UDS FTLD Data Template IVP (Version 3, March 2015) Page 12
Form E2F Imaging Available 1 45 FTDSMRI N 1 2 47 48 FTDSMMO N 1a 2 50 51 FTDSMDY N 1a 4 53 56 FTDSMYR N 1a 1 58 FTDSMDIC N 1b 60 60 119 FTDSMDIS C 1b1 1 121 FTDSMADN N 1c 60 123 182 FTDSMADV C 1c1 1 184 FTDSMMAN N 1d 60 186 245 FTDSMMAO C 1d0 60 247 306 FTDSMMAM C 1d1 1 308 FTDSMFS N 1e 60 310 369 FTDSMFSO C 1e1 1 371 FTDSMQU N 1f 1 373 FTDFDGPT N 2 2 375 376 FTDFPMO N 2a 2 378 379 FTDFPDY N 2a 4 381 384 FTDFPYR N 2a 1 386 FTDFDDIC N 2b 60 388 447 FTDFDDID C 2b1 1 449 FTDFDADN N 2c 60 451 510 FTDFDADV C 2c1 1 512 FTDFDMAN N 2d 60 514 573 FTDFDMAO C 2d0 60 575 634 FTDFDMAM C 2d1 1 636 FTDFDQU N 2e NACC UDS FTLD Data Template IVP (Version 3, March 2015) Page 13
Form Ae2F imaging available CONT. 1 638 FTDAMYPT N 3 2 640 641 FTDAMMO N 3a 2 643 644 FTDAMDY N 3a 4 646 649 FTDAMYR N 3a 1 651 FTDAMDIC N 3b 60 653 712 FTDAMDID C 3b1 1 714 FTDAMLIG N 3c 60 716 775 FTDAMLIO C 3c1 1 777 FTDAMADN N 3d 60 779 838 FTDAMADV C 3d1 1 840 FTDAMMAN N 3e 60 842 901 FTDAMMAO C 3e0 60 903 962 FTDAMMAM C 3e1 1 964 FTDAMQU N 3f 1 966 FTDOTHER N 4 1 968 FTDOTDOP N 4a 1 970 FTDOTSER N 4b 1 972 FTDOTCHO N 4c 1 974 FTDOTANO N 4d 60 976 1035 FTDOTANS C 4d1 NACC UDS FTLD Data Template IVP (Version 3, March 2015) Page 14
Form E3F Imaging in Diagnosis 1 45 FTDIDIAG N 1 1 47 FTDSMRIO N 2 1 49 FTDMRIFA N 2a 1 51 FTDMRIRF N 2a1 1 53 FTDMRILF N 2a2 1 55 FTDMRIRT N 2a3 1 57 FTDMRILT N 2a4 1 59 FTDMRIRM N 2a5 1 61 FTDMRILM N 2a6 1 63 FTDMRIRP N 2a7 1 65 FTDMRILP N 2a8 1 67 FTDMRIRB N 2a9 1 69 FTDMRILB N 2a10 1 71 FTDMRIOB N 2a11 60 73 132 FTDMRIOS C 2a11a 1 134 FTDFDGPE N 3 1 136 FTDFDGFH N 3a 1 138 FTDFDGRF N 3a1 1 140 FTDFDGLF N 3a2 1 142 FTDFDGRT N 3a3 1 144 FTDFDGLT N 3a4 1 146 FTDFDGRM N 3a5 1 148 FTDFDGLM N 3a6 1 150 FTDFDGRP N 3a7 1 152 FTDFDGLP N 3a8 1 154 FTDFDGRB N 3a9 NACC UDS FTLD Data Template IVP (Version 3, March 2015) Page 15
Form e3f imaging IN diagnosis CONT. 1 156 FTDFDGLB N 3a10 1 158 FTDFDGOA N 3a11 60 160 219 FTDFDGOS C 3a11a 1 221 FTDAMYP N 4 1 223 FTDAMYVI N 4a 1 225 FTDAMYRF N 4a1 1 227 FTDAMYLF N 4a2 1 229 FTDAMYRT N 4a3 1 231 FTDAMYLT N 4a4 1 233 FTDAMYRM N 4a5 1 235 FTDAMYLM N 4a6 1 237 FTDAMYRP N 4a7 1 239 FTDAMYLP N 4a8 1 241 FTDAMYRB N 4a9 1 243 FTDAMYLB N 4a10 1 245 FTDAMYOA N 4a11 60 247 306 FTDAMYOS C 4a11a 1 308 FTDCBFSP N 5 1 310 FTDCBFVI N 5a 1 312 FTDCBFRF N 5a1 1 314 FTDCBFLF N 5a2 1 316 FTDCBFRT N 5a3 1 318 FTDCBFLT N 5a4 1 320 FTDCBFRM N 5a5 1 322 FTDCBFLM N 5a6 1 324 FTDCBFRP N 5a7 1 326 FTDCBFLP N 5a8 1 328 FTDCBFRB N 5a9 1 330 FTDCBFLB N 5a10 1 332 FTDCBFOA N 5a11 60 334 393 FTDCBFOS C 5a11a 1 395 FTDOTHI N 6 60 397 456 FTDOTHIS C 6a NACC UDS FTLD Data Template IVP (Version 3, March 2015) Page 16