NACC Uniform Data Set (UDS) FTLD Module


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1 NACC Uniform Data Set (UDS) FTLD Module Data Template For FOLLOWUP Visit Packet Version 2.0, January 2012 Copyright 2013 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). NOTE: Version 2 is NOT the most current version of the FTLD Moudle forms and is no longer used for data submission. For the most current version, please visit
2 FTLD Module to the Uniform Data Set Data Template for the Followup 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 Followup 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 fixedformat 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 tabdelimited files, all fields must be separated by one tab. For commadelimited 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.
3 Coding for form header (first 10 data elements on each form) PACKET = FF (The letter F, for the Followup Visit FTLD Module) FORMID = Form ID (I.e., Z1F, A3A, A3F, etc.) FORMVER = 2 Although this is the first version of the FTLD forms, the FORMVER is 2 because the FTLD Module was initially created to be used with Version 2 of the UDS. 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 01/01/2012 VISITYR VISITNUM = Visit ID Assigned by your Center; need not start with 1 INITIALS = Examiner s initials (Initials of the person conducting the interview)
4 Form Z1F Form Checklist PACKET C FORMID C FORMVER N ADCID N PTID C VISITMO N VISITDAY N VISITYR N VISITNUM C INITIALS C FTDA3AFS N 1a FTDA3AFR N 1b FTDA3AFC C 1c FTDA3FS N 2a FTDA3FR N 2b FTDA3FC C 2c FTDC4FS N 3a FTDC4FR N 3b FTDC4FC C 3c FTDC5FS N 4a FTDC5FR N 4b FTDC5FC C 4c FTDC6FS N 5a FTDC6FR N 5b FTDC6FC C 5c NACC UDS FTLD Data Template FVP (Version 2, January 2012) Page 1
5 Form A3aF Record of Consent for Biologic Specimen Use PACKET C FORMID C FORMVER N ADCID N PTID C VISITMO N VISITDAY N VISITYR N VISITNUM C INITIALS C FTDRELCO N FTDSIBBY N FTDCHDBY N FTDSTORE N 1a FTDSLEAR N 1b FTDCOMME N 1c NACC UDS FTLD Data Template FVP (Version 2, January 2012) Page 2
6 Form A3F Family History: Affected Family Members PACKET C FORMID C FORMVER N ADCID N PTID C VISITMO N VISITDAY N VISITYR N VISITNUM C INITIALS C FTDFA3F1 N FTDAFF N 1a FTDMUTAT N 1b FTDPMUT N 1c FTDPMUTX C 1c FTDMCLAB N 1d FTDMRLAB N 1e FTDMFAMR N 1f FTDMOTH N 1g FTDMOTHX C 1g FTDFA3F2 N FTDMOMN N 2aa FTDMOMP N 2ab FTDMOME N 2ac FTDMOMA N 2ad FTDDADN N 2ba FTDDADP N 2bb FTDDADE N 2bc FTDDADA N 2bd FTDFA3F3 N FTDBSAM N 3aa NACC UDS FTLD Data Template FVP (Version 2, January 2012) Page 3
7 Form A3F family history: affected family members CONTINUED FTDBSA N 3aa FTDNSA N 3ab FTDPSA N 3ac FTDMSA N 3ad FTDASA N 3ae FTDBSBM N 3ba FTDBSB N 3ba FTDNSB N 3bb FTDPSB N 3bc FTDMSB N 3bd FTDASB N 3be FTDBSCM N 3ca FTDBSC N 3ca FTDNSC N 3cb FTDPSC N 3cc FTDMSC N 3cd FTDASC N 3ce FTDBSDM N 3da FTDBSD N 3da FTDNSD N 3db FTDPSD N 3dc FTDMSD N 3dd FTDASD N 3de FTDBSEM N 3ea FTDBSE N 3ea FTDNSE N 3eb FTDPSE N 3ec FTDMSE N 3ed FTDASE N 3ee FTDBSFM N 3fa FTDBSF N 3fa FTDNSF N 3fb FTDPSF N 3fc FTDMSF N 3fd FTDASF N 3fe NACC UDS FTLD Data Template FVP (Version 2, January 2012) Page 4
8 Form A3F family history: affected family members CONTINUED FTDBSGM N 3ga FTDBSG N 3ga FTDNSG N 3gb FTDPSG N 3gc FTDMSG N 3gd FTDASG N 3ge FTDBSHM N 3ha FTDBSH N 3ha FTDNSH N 3hb FTDPSH N 3hc FTDMSH N 3hd FTDASH N 3he FTDBSIM N 3ia FTDBSI N 3ia FTDNSI N 3ib FTDPSI N 3ic FTDMSI N 3id FTDASI N 3ie FTDBSJM N 3ja FTDBSJ N 3ja FTDNSJ N 3jb FTDPSJ N 3jc FTDMSJ N 3jd FTDASJ N 3je FTDBSKM N 3ka FTDBSK N 3ka FTDNSK N 3kb FTDPSK N 3kc FTDMSK N 3kd FTDASK N 3ke FTDBSLM N 3la FTDBSL N 3la FTDNSL N 3lb FTDPSL N 3lc FTDMSL N 3ld NACC UDS FTLD Data Template FVP (Version 2, January 2012) Page 5
9 Form A3F family history: affected family members CONTINUED FTDASL N 3le FTDBSMM N 3ma FTDBSM N 3ma FTDNSM N 3mb FTDPSM N 3mc FTDMSM N 3md FTDASM N 3me FTDFA3F4 N FTDBCAM N 4aa FTDBCA N 4aa FTDNCA N 4ab FTDPCA N 4ac FTDMCA N 4ad FTDACA N 4ae FTDBCBM N 4ba FTDBCB N 4ba FTDNCB N 4bb FTDPCB N 4bc FTDMCB N 4bd FTDACB N 4be FTDBCCM N 4ca FTDBCC N 4ca FTDNCC N 4cb FTDPCC N 4cc FTDMCC N 4cd FTDACC N 4ce FTDBCDM N 4da FTDBCD N 4da FTDNCD N 4db FTDPCD N 4dc FTDMCD N 4dd FTDACD N 4de FTDBCEM N 4ea FTDBCE N 4ea FTDNCE N 4eb NACC UDS FTLD Data Template FVP (Version 2, January 2012) Page 6
10 Form A3F family history: affected family members CONTINUED FTDPCE N 4ec FTDMCE N 4ed FTDACE N 4ee FTDBCFM N 4fa FTDBCF N 4fa FTDNCF N 4fb FTDPCF N 4fc FTDMCF N 4fd FTDACF N 4fe FTDBCGM N 4ga FTDBCG N 4ga FTDNCG N 4gb FTDPCG N 4gc FTDMCG N 4gd FTDACG N 4ge FTDBCHM N 4ha FTDBCH N 4ha FTDNCH N 4hb FTDPCH N 4hc FTDMCH N 4hd FTDACH N 4he FTDBCIM N 4ia FTDBCI N 4ia FTDNCI N 4ib FTDPCI N 4ic FTDMCI N 4id FTDACI N 4ie FTDBCJM N 4ja FTDBCJ N 4ja FTDNCJ N 4jb FTDPCJ N 4jc FTDMCJ N 4jd FTDACJ N 4je FTDBCKM N 4ka FTDBCK N 4ka NACC UDS FTLD Data Template FVP (Version 2, January 2012) Page 7
11 Form A3F family history: affected family members CONTINUED FTDNCK N 4kb FTDPCK N 4kc FTDMCK N 4kd FTDACK N 4ke FTDBCLM N 4la FTDBCL N 4la FTDNCL N 4lb FTDPCL N 4lc FTDMCL N 4ld FTDACL N 4le FTDBCMM N 4ma FTDBCM N 4ma FTDNCM N 4mb FTDPCM N 4mc FTDMCM N 4md FTDACM N 4me NACC UDS FTLD Data Template FVP (Version 2, January 2012) Page 8
12 Form B3F Supplemental UPDRS PACKET C FORMID C FORMVER N ADCID N PTID C VISITMO N VISITDAY N VISITYR N VISITNUM C INITIALS C FTDLTFAS N A FTDLIMB N A FTDBULB N A FTDEYE N A FTDDYST N A FTDIDEO N A FTDALIEN N A FTDMYOCL N A FTDCORTS N A FTDGSEV N B FTDGSEVX C B1a FTDGTYP N B FTDGTYPG C B2a FTDGTYPX C B2b NACC UDS FTLD Data Template FVP (Version 2, January 2012) Page 9
13 Form B9F Clinical PPA and bvftd Features PACKET C FORMID C FORMVER N ADCID N PTID C VISITMO N VISITDAY N VISITYR N VISITNUM C INITIALS C 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 23 NACC UDS FTLD Data Template FVP (Version 2, January 2012) Page 10
14 Form B9F clinical ppa and bvftd features CONTINUED FTDEMGPY N FTDEMGMN N FTDPABVF N 26 NACC UDS FTLD Data Template FVP (Version 2, January 2012) Page 11
15 Form C1F Neuropsychological Battery Summary Scores PACKET C FORMID C FORMVER N ADCID N PTID C VISITMO N VISITDAY N VISITYR N VISITNUM C INITIALS C FTDBENTC N 1a FTDVERFC N 2a FTDVERFN N 2b FTDVERNF N 2c FTDVERLC N 2d FTDVERLR N 2e FTDVERLN N 2f FTDVERTN N 2g FTDVERTE N 2h FTDVERTI N 2i FTDWORRC N 3a FTDWORRS N 3b FTDWORRR N 3c FTDWORIC N 3d FTDWORIS N 3e FTDWORIR N 3f FTDWORIP N 3g FTDBENTD N 4a FTDBENRS N 4b FTDSEMMT N 5a FTDSEMAA N 6a FTDSEMTA N 6b FTDSEMSU N 6c NACC UDS FTLD Data Template FVP (Version 2, January 2012) Page 12
16 Form c1f neuropsychological battery summary scores CONTINUED FTDANASW N 7a FTDANAOW N 7b FTDANATS N 7c FTDSENAS N 8a FTDSENOS N 8b FTDSENSR N 8c FTDSENPR N 8d FTDNOUNC N 9a FTDVERBC N 9b FTDRATIO N 9c FTDREAAS N 10a FTDREAOS N 10b FTDREASR N 10c FTDREAPR N 10d NACC UDS FTLD Data Template FVP (Version 2, January 2012) Page 13
17 Form C2F Social Norms Questionnaire PACKET C FORMID C FORMVER N ADCID N PTID C VISITMO N VISITDAY N VISITYR N VISITNUM C INITIALS C 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 22 NACC UDS FTLD Data Template FVP (Version 2, January 2012) Page 14
18 Form C2F social norms questionnaire CONTINUED FTDSNTOT N FTDSNTBS N FTDSNTOS N FTDSNRAT N 26 NACC UDS FTLD Data Template FVP (Version 2, January 2012) Page 15
19 Form C3F Social Behavior Observer Checklist PACKET C FORMID C FORMVER N ADCID N PTID C VISITMO N VISITDAY N VISITYR N VISITNUM C INITIALS C FTDSELF N FTDBADLY N 1a FTDDEPR N 1b FTDEMOTD N 1c FTDLSELF N FTDDISR N 2a FTDBELCH N 2b FTDGIGG N 2c FTDPRIV N FTDNEGAT N 3a FTDECOMM N 3b FTDINAPJ N 3c FTDFAILA N FTDRESIS N 4a FTDINTER N 4b FTDVERBA N 4c FTDPHYSI N 4d FTDTOPIC N 4e FTDPROTO N 4f FTDPREO N FTDFINI N 5a NACC UDS FTLD Data Template FVP (Version 2, January 2012) Page 16
20 Form C3F social behavior observer checklist CONTINUED FTDACTED N FTDABS N 6a FTDFEEDB N 6b FTDFRUST N 6c FTDANXI N FTDNERVO N 7a 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 FVP (Version 2, January 2012) Page 17
21 Form C4F Behavioral Inhibition Scale PACKET C FORMID C FORMVER N ADCID N PTID C VISITMO N VISITDAY N VISITYR N VISITNUM C INITIALS C FTDCPC4F N FTDWORKU N FTDMIST N FTDCRIT N FTDWORR N FTDBAD N FTDPOOR N FTDFFEAR N FTDBIST N 8 NACC UDS FTLD Data Template FVP (Version 2, January 2012) Page 18
22 Form C5F Interpersonal Reactivity Index PACKET C FORMID C FORMVER N ADCID N PTID C VISITMO N VISITDAY N VISITYR N VISITNUM C INITIALS C FTDCPC5F N FTDINSEX N 0a FTDINFMO N 0b FTDINFYR N 0b FTDINFRE N 0c 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 FVP (Version 2, January 2012) Page 19
23 Form C6F Revised Selfmonitoring Scale PACKET C FORMID C FORMVER N ADCID N PTID C VISITMO N VISITDAY N VISITYR N VISITNUM C INITIALS C 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 FVP (Version 2, January 2012) Page 20
24 Form E2F Imaging Available PACKET C FORMID C FORMVER N ADCID N PTID C VISITMO N VISITDAY N VISITYR N VISITNUM C INITIALS C FTDSMRI N FTDSMMO N 1a FTDSMDY N 1a FTDSMYR N 1a 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 NACC UDS FTLD Data Template FVP (Version 2, January 2012) Page 21
25 Form E2F IMAGING available CONTINUED FTDFDMAO C 2d FTDFDMAM C 2d FTDFDQU N 2e 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 FVP (Version 2, January 2012) Page 22
26 Form E3F Imaging in Diagnosis PACKET C FORMID C FORMVER N ADCID N PTID C VISITMO N VISITDAY N VISITYR N VISITNUM C INITIALS C FTDIDIAG N FTDSMRIO N FTDMRIFA N 2a 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 3a7 NACC UDS FTLD Data Template FVP (Version 2, January 2012) Page 23
27 Form E3F IMAGING in diagnosis CONTINUED FTDFDGLP N 3a FTDFDGRB N 3a 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 FVP (Version 2, January 2012) Page 24
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