Department of Epidemiology, School of Public Health and Community Medicine, University of Washington 4311 11 th Avenue NE #300 Seattle, WA 98105 phone: (206) 543-8637; fax: (206) 616-5927 e-mail: naccmail@u.washington.edu website: https://www.alz.washington.edu NACC Uniform Data Set (UDS) DATA ELEMENT DICTIONARY for Milestones Form (.0, February 2008) This publication was funded by the National Institutes of Health through the National Institute on Aging (Cooperative Agreement #AG016976)
Data Element Dictionary NACC UDS Milestones Form (M1) GLOSSARY OF TERMS : Indicates order of appearance on the UDS Milestones form. : For non-fixed-format files, variable name must match exactly. Version: 2 : Used on the web page to indicate variable. Question: The question as it appears on the UDS Milestones form. Length of Field: For fixed field formats, number of columns for this variable. Column Positions: For fixed field formats, column numbers for this variable. : For non-fixed field formats, variable type as numerical or character. : List of codes with mapping instructions. (version 2.0, February 2008) i
Form Header (Milestones) 0A PACKET Packet code Column Positions 1 2 Character M = Milestones Packet 0B FORMID Form ID Length of Field 3 Column Positions 4 6 Character M1 0C FORMVER Form version number Length of Field 3 Column Positions 8 10 See bottom of current form, use integer portion of version number. For example, version 2.0 is FORMVER = 2. NACC UDS Data Element Dictionary Milestones (version 2.0, February 2008) Form Header: page 1
0D ADCID Center ID Column Positions 12 13 Form Header (Milestones) 2 38, 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 School of Medicine 12 = New York University 13 = Northwestern University 14 = Oregon Health & Science University 15 = Rush University 16 = U 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 Saint 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 Note: ADCID is converted to a randomly generated NACCADC in research data sets generated by NACC. NACC UDS Data Element Dictionary Milestones (version 2.0, February 2008) Form Header: page 2
0E 0 PTID Column Positions 15 24 Form Header (Milestones) ADC Subject ID ADC Subject ID Character Follow your Center s Patient ID scheme; use same ID as in MDS, if enrolled in MDS. Number must be unique within data from your Center, and be used for each visit for subject. Note: PTID is replaced by a randomly generated NACCID in research data sets generated by NACC. 0F VISITMO Form date month Form date month Column Positions 26 27 1 12 The date on which the Milestones Form was completed; cannot precede the data of the initial visit. 0G VISITDAY Form date day Form date day Column Positions 29 30 1 31 The date on which the Milestones Form was completed; cannot precede the data of the initial visit. NACC UDS Data Element Dictionary Milestones (version 2.0, February 2008) Form Header: page 3
Length of Field 4 0H VISITYR Column Positions 32 35 Form Header (Milestones) Form date year Form date year 2005 to present year The date on which the Milestones Form was completed; cannot precede the data of the initial visit. 0J INITIALS Examiner s initials Examiner s initials Length of Field 3 Column Positions 41 43 Character Any text or numbers, but cannot use single quotes ( ), double quotes ( ), ampersands (&) or percentage signs (%). Note: INITIALS is never released in research data sets generated by NACC. NACC UDS Data Element Dictionary Milestones (version 2.0, February 2008) Form Header: page 4
1 Column Positions 45 DECEASED Deceased Subject has died 0 = No (Box is not checked) 1MO DEATHMO Column Positions 47 48 Missing Codes Date of death, month Date of death, month 1 12 99 = month unknown Blank if #1, DECEASED = 0 (No). Date must be after the last visit date. 1DY DEATHDY Date of death, day Date of death, day Column Positions 50 51 Missing Codes 1 31 99 day unknown Blank if #1, DECEASED = 0 (No). Date must be after the last visit date. Note: DEATHDY is not available to non-adc researchers. NACC UDS Data Element Dictionary Milestones (version 2.0, February 2008) Form M1: page 5
1YR DEATHYR Date of death, year Date of death, year Length of Field 4 Column Positions 53 56 2005 to present year Blank if #1, DECEASED = 0 (No). Date must be after the last visit date. 1A AUTOPSY Autopsy ADC autopsy done (data pending or submitted) Column Positions 58 0 = No (Box is not checked) Blank if #1, DECEASED = 0 (No). 2 DISCONT Discontinued Subject has discontinued ADC participation Column Positions 60 0 = No (Box is not checked) NACC UDS Data Element Dictionary Milestones (version 2.0, February 2008) Form M1: page 6
2MO DISCMO Column Positions 62 63 Missing Codes Date discontinued, month Date discontinued, month 1 12 99 = month unknown Blank if #2, DISCONT = 0 (No). Date must be after the last visit date. 2DY 2DY DISCDAY Date discontinued, day Date discontinued, day Column Positions 65 66 Missing Codes 1 31 99 = day unknown Blank if #2, DISCONT = 0 (No). Date must be after the last visit date. Note: DISCDAY is not available to non-adc researchers. 2YR DISCYR Date discontinued, year Date discontinued, year Length of Field 4 Column Positions 68 71 2005 to present year Blank if #2, DISCONT = 0 (No). Date must be after the last visit date. NACC UDS Data Element Dictionary Milestones (version 2.0, February 2008) Form M1: page 7
2A Column Positions 73 DISCREAS Reason discontinued Primary reason discontinued 1 = Refused further participation in ADC 2 = Moved out of area 3 = Discontinued by ADC decision/protocol 4 = Seeking care elsewhere 8 = Other Blank if #2, DISCONT=0 (NO). 2AX DISCREAX Reason discontinued, other specify Reason discontinued, other specify Length of Field 60 Column Positions 75 134 Character Any text or numbers but cannot use single quotes ( ), double quotes ( ), ampersands (&), or percentage signs (%). Blank if #2, DISCONT=0 (NO) or Blank if #2A, DISCREAS 8 (Other). 3 REJOINED Rejoined ADC participation after discontinuing Subject has rejoined ADC participation after discontinuing. Column Positions 136 0 = No (Box is not checked) NACC UDS Data Element Dictionary Milestones (version 2.0, February 2008) Form M1: page 8
4 NURSEHOM Entered nursing home permanently Subject has entered nursing home with expectation of permanent residence Column Positions 138 0 = No (Box is not checked) 4MO NURSEMO Date entered nursing home, month Date entered nursing home, month Column Positions 140 141 Missing Codes 1 12 99 = month unknown Blank if #4, NURSEHOM = 0 (No). 4DY NURSEDY Date entered nursing home, day Date entered nursing home, day Column Positions 143 144 Missing Codes 1 31 99 = day unknown Blank if #4, NURSEHOM = 0 (No). Note: NURSEDY is not available to non-adc researchers. NACC UDS Data Element Dictionary Milestones (version 2.0, February 2008) Form M1: page 9
Length of Field 4 4YR NURSEYR Column Positions 146 149 Date entered nursing home, year Date entered nursing home, year 2005 to present year Blank if #4, NURSEHOM = 0 (No). Date must be on or after 9/1/2005. 5 Column Positions 151 6 Column Positions 153 PROTOCOL NACC data collection protocol change Subject s NACC data collection protocol has changed as indicated: 1 = To UDS telephone follow-up 2 = To minimal ADC contact (e.g., followed only to obtain autopsy) 3 = To UDS in-person visit NPSYTEST Unable to collect neuropsychological test data Unable to collect neuropsychological test data 0 = No (Box is not checked) Blank if #5 PROTOCOL=3 (Changed to In-person Visit) NACC UDS Data Element Dictionary Milestones (version 2.0, February 2008) Form M1: page 10
6A NPCOGIMP Too cognitively impaired Unable to collect neuropsychological test data due to: Too cognitively impaired Column Positions 155 0 = No (Box is not checked) 6B NPPHYILL Too physically impaired Unable to collect neuropsychological test data due to: Too physically impaired Column Positions 157 0 = No (Box is not checked) 6C NPHOMEN Homebound/nursing home/cannot travel Unable to collect neuropsychological test data due to: Homebound/nursing home/cannot travel Column Positions 159 0 = No (Box is not checked) NACC UDS Data Element Dictionary Milestones (version 2.0, February 2008) Form M1: page 11
6D Column Positions 161 NPREFUS Refused testing Unable to collect neuropsychological test data due to: Refused testing 0 = No (Box is not checked) 6E Column Positions 163 NPOTHREA Other specify Unable to collect neuropsychological test data due to: Other specify 0 = No (Box is not checked) 6EX Length of Field 60 NPOTHREX Other specify Column Positions 165 224 Unable to collect neuropsychological test data due to: Other specify Character Any text or numbers but cannot use single quotes ( ), double quotes ( ), ampersands (&), or percentage signs (%). or #6E, NPOTHREA 1 (Yes). NACC UDS Data Element Dictionary Milestones (version 2.0, February 2008) Form M1: page 12
7 Column Positions 226 Blank PHYNDATA Unable to collect physical/neurological data Unable to collect physical/neurological data 0 = No (Box is not checked) Blank if #5 PROTOCOL = 3 (Change to In-person Visit) 7A PHYCOG Too cognitively impaired Unable to collect neuropsychological data due to: Too cognitively impaired Column Positions 228 0 = No (Box is not checked) 7B PHYILL Too physically impaired Unable to collect neuropsychological data due to: Too physically impaired Column Positions 230 0 = No (Box is not checked) NACC UDS Data Element Dictionary Milestones (version 2.0, February 2008) Form M1: page 13
7C PHYHOME Homebound/nursing home/cannot travel Unable to collect neuropsychological data due to: Homebound/ nursing home/cannot travel Column Positions 232 0 = No (Box is not checked) 7D PHYREFUS Refused examination Unable to collect physical/neurological data due to: Refused examination Column Positions 234 0 = No (Box is not checked) 7E PHYOTH Other Unable to collect physical/neurological data due to: Other Column Positions 236 0 = No (Box is not checked) NACC UDS Data Element Dictionary Milestones (version 2.0, February 2008) Form M1: page 14
7EX Length of Field 60 PHYOTHX Other specify Column Positions 238 297 Unable to collect physical/neurological data due to: Other specify Character Any text or numbers but cannot use single quotes ( ), double quotes ( ), ampersands (&), or percentage signs (%). or #7E PHYOTH 1 (Yes). NACC UDS Data Element Dictionary Milestones (version 2.0, February 2008) Form M1: page 15