Version 3.0, March 2015

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1 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).

2 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 Form Z1 replaced by Form Z1X Z1 All Numerous variables added on language of administration

3 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.

4 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)

5 Form Z1X Form Checklist INITIALS C 1 45 LANGA1 N 1a 1 47 LANGA2 N 2a 1 49 A2SUB N 2b A2NOT N 2c 1 54 LANGA3 N 3a 1 56 A3SUB N 3b A3NOT N 3c 1 61 LANGA4 N 4a 1 63 A4SUB N 4b A4NOT N 4c 1 68 LANGA5 N 5a 1 70 LANGB1 N 6a 1 72 B1SUB N 6b B1NOT N 6c 1 77 LANGB4 N 7a 1 79 LANGB5 N 8a 1 81 B5SUB N 8b 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

6 B6NOT N 9c 1 93 LANGB7 N 10a 1 95 B7SUB N 10b B7NOT N 10c LANGB8 N 11a LANGB9 N 12a LANGC2 N 13a LANGD1 N 14a LANGD2 N 15a LANGA3A N 16a FTDA3AFS N 16b FTDA3AFR N 16c LANGB3F N 17a LANGB9F N 18a LANGC1F N 19a LANGC2F N 20a LANGC3F N 21a LANGC4F N 22a FTDC4FS N 22b FTDC4FR N 22c LANGC5F N 23a FTDC5FS N 23b FTDC5FR N 23c LANGC6F N 24a FTDC6FS N 24b FTDC6FR N 24c LANGE2F N 25a LANGE3F N 26a LANGCLS N 27a CLSSUB N 27b NACC UDS FTLD Data Template IVP (Version 3, March 2015) Page 2

7 Form A3a Record of Consent for Biologic Specimen Use 1 45 FTDRELCO N FTDSIBBY N FTDCHDBY N 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

8 Form B3F Supplemental UPDRS 1 45 FTDLTFAS N A FTDLIMB N A FTDBULB N A FTDGSEV N B FTDGSEVX C B1a FTDGTYP N B FTDGTYPG C B2a FTDGTYPX C B2b NACC UDS FTLD Data Template IVP (Version 3, March 2015) Page 4

9 Form B9F Clinical PPA and bvftd Features 1 45 FTDPPASL N FTDPPAPO N FTDPPAIW N FTDPPASW N FTDPPAPK N FTDPPAGS N FTDPPAEH N FTDPPACS N FTDPPASS N FTDPPASR N FTDPPASD N FTDCPPA N FTDCPPAS N FTDBVCLN N FTDBVDIS N FTDBVAPA N FTDBVLOS N FTDBVRIT N FTDBVHYP N FTDBVNEU N FTDBVIDL N FTDBVFT N FTDEMGPV N FTDEMGPY N FTDEMGMN N FTDPABVF N 26 NACC UDS FTLD Data Template IVP (Version 3, March 2015) Page 5

10 Form C1F Neuropsychological Battery Summary Scores FTDWORRC N 1a FTDWORRS N 1b FTDWORRR N 1c FTDWORIC N 1d FTDWORIS N 1e FTDWORIR N 1f FTDWORIP N 1g FTDSEMMT N 2a FTDSEMAA N 3a FTDSEMTA N 3b FTDSEMSU N 3c FTDANASW N 4a FTDANAOW N 4b FTDANATS N 4c FTDSENAS N 5a FTDSENOS N 5b FTDSENSR N 5c FTDSENPR N 5d FTDNOUNC N 6a FTDVERBC N 6b FTDRATIO N 6c FTDREAAS N 7a FTDREAOS N 7b FTDREASR N 7c FTDREAPR N 7d NACC UDS FTLD Data Template IVP (Version 3, March 2015) Page 6

11 Form C2F Social Norms Questionnaire FTDCPC2F N FTDHAIRD N FTDSPIT N FTDNOSE N FTDCOAGE N FTDCRY N FTDCUT N FTDYTRIP N FTDEATP N FTDTELLA N FTDOPIN N FTDLAUGH N FTDSHIRT N FTDKEEPM N FTDPICKN N FTDOVER N FTDEATR N FTDHAIRL N FTDSHIRW N FTDMOVE N FTDHUGS N FTDLOUD N FTDLOST N FTDSNTOT N FTDSNTBS N FTDSNTOS N FTDSNRAT N 26 NACC UDS FTLD Data Template IVP (Version 3, March 2015) Page 7

12 Form C3F Social Behavior Observer Checklist 1 45 FTDSELF N FTDBADLY N 1a 1 49 FTDDEPR N 1b 1 51 FTDEMOTD N 1c 1 53 FTDLSELF N FTDDISR N 2a 1 57 FTDBELCH N 2b 1 59 FTDGIGG N 2c 1 61 FTDPRIV N FTDNEGAT N 3a 1 65 FTDECOMM N 3b 1 67 FTDINAPJ N 3c 1 69 FTDFAILA N 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 FTDFINI N 5a 1 87 FTDACTED N FTDABS N 6a 1 91 FTDFEEDB N 6b NACC UDS FTLD Data Template IVP (Version 3, March 2015) Page 8

13 Form C3F SOCIAL behavior observer checklist cont FTDFRUST N 6c 1 95 FTDANXI N FTDNERVO N 7a 1 99 FTDNDIAG N 7b FTDSTIMB N FTDSTIME N 8a FTDOBJEC N 8b FTDCIRCU N 8c FTDPERSE N FTDREPEA N 9a FTDANECD N 9b FTDDINIT N FTDDELAY N 10a FTDADDVE N 10b FTDFLUCT N FTDLOSTT N 11a FTDREPRU N 11b FTDTRAIN N 11c FTDDISCL N FTDSPONT N 12a FTDSPONR N 12b FTDSTOOD N 12c FTDTOUCH N 12d FTDDSOCI N FTDEXAGG N FTDSBTOT N FTDSBCTO N FTDLENGT N 17 NACC UDS FTLD Data Template IVP (Version 3, March 2015) Page 9

14 Form C4F Behavioral Inhibition Scale 1 45 FTDCPC4F N FTDWORKU N FTDMIST N FTDCRIT N FTDWORR N FTDBAD N FTDPOOR N FTDFFEAR N FTDBIST N 8 NACC UDS FTLD Data Template IVP (Version 3, March 2015) Page 10

15 Form C5F Interpersonal Reactivity Index 1 45 FTDCPC5F N FTDINSEX N 0a FTDINFMO N 0b FTDINFYR N 0b 1 57 FTDINFRE N 0c 1 59 FTDFEEL N FTDDIFF N FTDSORR N FTDSIDE N FTDADVAN N FTDIMAG N FTDMISF N FTDWASTE N FTDPITY N FTDQTOUC N FTDSIDES N FTDSOFTH N FTDUPSET N FTDCRITI N FTDIRIEC N FTDIRIPT N 16 NACC UDS FTLD Data Template IVP (Version 3, March 2015) Page 11

16 Form C6F Revised Self-monitoring Scale 1 45 FTDCPC6F N FTDALTER N FTDEMOT N FTDACROS N FTDCONV N FTDINTUI N FTDJOKE N FTDIMAGP N FTDINAPP N FTDCHBEH N FTDADBEH N FTDLYING N FTDGOODF N FTDREGUL N FTDSMSCR N FTDSPSCR N FTDRSMST N 16 NACC UDS FTLD Data Template IVP (Version 3, March 2015) Page 12

17 Form E2F Imaging Available 1 45 FTDSMRI N FTDSMMO N 1a FTDSMDY N 1a FTDSMYR N 1a 1 58 FTDSMDIC N 1b FTDSMDIS C 1b FTDSMADN N 1c FTDSMADV C 1c FTDSMMAN N 1d FTDSMMAO C 1d FTDSMMAM C 1d FTDSMFS N 1e FTDSMFSO C 1e FTDSMQU N 1f FTDFDGPT N FTDFPMO N 2a FTDFPDY N 2a FTDFPYR N 2a FTDFDDIC N 2b FTDFDDID C 2b FTDFDADN N 2c FTDFDADV C 2c FTDFDMAN N 2d FTDFDMAO C 2d FTDFDMAM C 2d FTDFDQU N 2e NACC UDS FTLD Data Template IVP (Version 3, March 2015) Page 13

18 Form Ae2F imaging available CONT FTDAMYPT N FTDAMMO N 3a FTDAMDY N 3a FTDAMYR N 3a FTDAMDIC N 3b FTDAMDID C 3b FTDAMLIG N 3c FTDAMLIO C 3c FTDAMADN N 3d FTDAMADV C 3d FTDAMMAN N 3e FTDAMMAO C 3e FTDAMMAM C 3e FTDAMQU N 3f FTDOTHER N FTDOTDOP N 4a FTDOTSER N 4b FTDOTCHO N 4c FTDOTANO N 4d FTDOTANS C 4d1 NACC UDS FTLD Data Template IVP (Version 3, March 2015) Page 14

19 Form E3F Imaging in Diagnosis 1 45 FTDIDIAG N FTDSMRIO N FTDMRIFA N 2a 1 51 FTDMRIRF N 2a FTDMRILF N 2a FTDMRIRT N 2a FTDMRILT N 2a FTDMRIRM N 2a FTDMRILM N 2a FTDMRIRP N 2a FTDMRILP N 2a FTDMRIRB N 2a FTDMRILB N 2a FTDMRIOB N 2a FTDMRIOS C 2a11a FTDFDGPE N FTDFDGFH N 3a FTDFDGRF N 3a FTDFDGLF N 3a FTDFDGRT N 3a FTDFDGLT N 3a FTDFDGRM N 3a FTDFDGLM N 3a FTDFDGRP N 3a FTDFDGLP N 3a FTDFDGRB N 3a9 NACC UDS FTLD Data Template IVP (Version 3, March 2015) Page 15

20 Form e3f imaging IN diagnosis CONT FTDFDGLB N 3a FTDFDGOA N 3a FTDFDGOS C 3a11a FTDAMYP N FTDAMYVI N 4a FTDAMYRF N 4a FTDAMYLF N 4a FTDAMYRT N 4a FTDAMYLT N 4a FTDAMYRM N 4a FTDAMYLM N 4a FTDAMYRP N 4a FTDAMYLP N 4a FTDAMYRB N 4a FTDAMYLB N 4a FTDAMYOA N 4a FTDAMYOS C 4a11a FTDCBFSP N FTDCBFVI N 5a FTDCBFRF N 5a FTDCBFLF N 5a FTDCBFRT N 5a FTDCBFLT N 5a FTDCBFRM N 5a FTDCBFLM N 5a FTDCBFRP N 5a FTDCBFLP N 5a FTDCBFRB N 5a FTDCBFLB N 5a FTDCBFOA N 5a FTDCBFOS C 5a11a FTDOTHI N FTDOTHIS C 6a NACC UDS FTLD Data Template IVP (Version 3, March 2015) Page 16