FTLD Downloads
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Since UDSv4 will no longer include the Z1X form as a data collection instrument, there have been some minor changes the data collected on the Z1X for the FTLD/LBD modules. See the table below for details. The content in the FTLD/LBD modules is not changing otherwise.
Please reference the previous documentation for available resources.
FTLD Changes Related to Z1X
The following table lists FTLD changes related to Z1X.
Be sure to also read Note on Form A3a (Record of Consent for Biological Specimen Use).
| Change Summary | UDSv3 Form | UDSv3 Question | UDSv3 Variable Name | UDSv3 Response Labels | UDSv4 Form | UDSv4 Question | UDSv4 Var Name | UDSv4 Response Labels |
|---|---|---|---|---|---|---|---|---|
| No change | header | PTID | PTID | Any text | header | PTID | PTID | Any text |
| No change | header | ADRC name | ADCID | List of current ADCIDs | header | ADRC name | ADCID | List of current ADCIDs |
| No change | header | ADRC Visit Number | VISITNUM | Any text | header | ADRC Visit Number | VISITNUM | Any text |
| No change | header | Packet Code | PACKET | IF, FF | header | Packet Code | PACKET | IF, FF |
| No change | header | Form version number | FORMVER | 3 | header | Form version number | FORMVER | 3 |
| UDSv3 variables consolidated into one date variable | header | Visit Month | VISITMO | 1 - 12 | header | Form Date | VISITDATE | mm/dd/yyyy or yyyy/mm/dd |
| UDSv3 variables consolidated into one date variable | header | Visit Day | VISITDAY | 1 - 31 | -- | -- | -- | -- |
| UDSv3 variables consolidated into one date variable | header | Visit Year | VISITYR | 2005 to the present year | -- | -- | -- | -- |
| Changed to form-specific in UDSv4 | header | Examiner-s initials | INITIALS | Any text | -- | -- | -- | -- |
| No longer in UDSv4 | header | Form ID | FORMID | A3A|B3F|B9F|C1F|C2F|C3F|C4F|C5F|C6F|E2F|E3F | -- | -- | -- | -- |
| New variable | -- | -- | -- | -- | a3a | A3a Record of Consent for Biologic Specimen Use - Form date | FRMDATEA3A | mm/dd/yyyy or yyyy/mm/dd |
| New variable | -- | -- | -- | -- | a3a | A3a Record of Consent for Biologic Specimen Use - Examiner's initials | INITIALSA3A | Any text |
| No change | z1x | A3A Record of consent for biologic specimen use - language | LANGA3A | 1, English|2, Spanish | a3a | A3a Record of Consent for Biologic Specimen Use - Language | LANGA3A | 1, English|2, Spanish |
| Change in variable name and response labels | z1x | A3A Record of consent for biologic specimen use - submitted | FTDA3AFS | 0, No | 1, Yes | a3a | A3a Record of Consent for Biologic Specimen Use - Submitted? | MODEA3A | 0, Not completed | 1, In-person |
| Change in variable name | z1x | If A3A not submitted, specify reason | FTDA3AFR | 95, Physical problem|96, Cognitive/behavioral problem|97, Other|98, Verbal refusal|99, Unknown or inadequate information | a3a | If 'A3a Record of Consent for Biologic Specimen Use' not submitted, specify reason | A3ANOT | 95, Physical problem|96, Cognitive/behavioral problem|97, Other|98, Verbal refusal|99, Unknown or inadequate information |
| New variable | -- | -- | -- | -- | b3f | B3F Supplemental UPDRS - Form date | FRMDATEB3F | mm/dd/yyyy or yyyy/mm/dd |
| New variable | -- | -- | -- | -- | b3f | B3F Supplemental UPDRS - Examiner's initials | INITIALSB3F | Any text |
| No change | z1x | B3F Supplemental UPDRS - language | LANGB3F | 1, English|2, Spanish | b3f | B3F Supplemental UPDRS - Language | LANGB3F | 1, English|2, Spanish |
| New variable | -- | -- | -- | -- | b9f | B9F Clinical PPA and bvFTD Features - Form date | FRMDATEB9F | mm/dd/yyyy or yyyy/mm/dd |
| New variable | -- | -- | -- | -- | b9f | B9F Clinical PPA and bvFTD Features - Examiner's initials | INITIALSB9F | Any text |
| No change | z1x | B9F Clinical PPA and bvFTD Features - language | LANGB9F | 1, English|2, Spanish | b9f | B9F Clinical PPA and bvFTD Features - Language | LANGB9F | 1, English|2, Spanish |
| New variable | -- | -- | -- | -- | c1f | C1F Neuropsychological Battery Summary Scores - Form date | FRMDATEC1F | mm/dd/yyyy or yyyy/mm/dd |
| New variable | -- | -- | -- | -- | c1f | C1F Neuropsychological Battery Summary Scores - Examiner's initials | INITIALSC1F | Any text |
| No change | z1x | C1F Neuropsychological Battery Summary Scores - language | LANGC1F | 1, English|2, Spanish | c1f | C1F Neuropsychological Battery Summary Scores - Language | LANGC1F | 1, English|2, Spanish |
| New variable | -- | -- | -- | -- | c2f | C2F Social Norms Questionnaire - Form date | FRMDATEC2F | mm/dd/yyyy or yyyy/mm/dd |
| New variable | -- | -- | -- | -- | c2f | C2F Social Norms Questionnaire - Examiner's initials | INITIALSC2F | Any text |
| No change | z1x | C2F Social Norms Questionnaire - language | LANGC2F | 1, English|2, Spanish | c2f | C2F Social Norms Questionnaire - Language | LANGC2F | 1, English|2, Spanish |
| New variable | -- | -- | -- | -- | c3f | C3F Social Behavior Observer Checklist - Form date | FRMDATEC3F | mm/dd/yyyy or yyyy/mm/dd |
| New variable | -- | -- | -- | -- | c3f | C3F Social Behavior Observer Checklist - Examiner's initials | INITIALSC3F | Any text |
| No change | z1x | C3F Social Behavior Observer Checklist - language | LANGC3F | 1, English|2, Spanish | c3f | C3F Social Behavior Observer Checklist - Language | LANGC3F | 1, English|2, Spanish |
| New variable | -- | -- | -- | -- | c4f | C4F Behavioral Inhibition Scale - Form date | FRMDATEC4F | mm/dd/yyyy or yyyy/mm/dd |
| New variable | -- | -- | -- | -- | c4f | C4F Behavioral Inhibition Scale - Examiner's initials | INITIALSC4F | Any text |
| No change | z1x | C4F Behavioral Inhibition Scale - language | LANGC4F | 1, English|2, Spanish | c4f | C4F Behavioral Inhibition Scale - Language | LANGC4F | 1, English|2, Spanish |
| Change in variable name and response labels | z1x | C4F Behavioral Inhibition Scale - submitted | FTDC4FS | 0, No | 1, Yes | c4f | C4F Behavioral Inhibition Scale - Submitted? | MODEC4F | 0, Not completed | 1, In-person |
| Change in variable name | z1x | If C4F not submitted, specify reason | FTDC4FR | 95, Physical problem|96, Cognitive/behavioral problem|97, Other|98, Verbal refusal|99, Unknown or inadequate information | c4f | If 'C4F Behavioral Inhibition Scale' not submitted, specify reason | C4FNOT | 95, Physical problem|96, Cognitive/behavioral problem|97, Other|98, Verbal refusal|99, Unknown or inadequate information |
| New variable | -- | -- | -- | -- | c5f | C5F Interpersonal Reactivity Index - Form date | FRMDATEC5F | mm/dd/yyyy or yyyy/mm/dd |
| New variable | -- | -- | -- | -- | c5f | C5F Interpersonal Reactivity Index - Examiner's initials | INITIALSC5F | Any text |
| No change | z1x | C5F Interpersonal Reactivity Index - language | LANGC5F | 1, English|2, Spanish | c5f | C5F Interpersonal Reactivity Index - Language | LANGC5F | 1, English|2, Spanish |
| Change in variable name and response labels | z1x | C5F Interpersonal Reactivity Index - submitted | FTDC5FS | 0, No | 1, Yes | c5f | C5F Interpersonal Reactivity Index - Submitted? | MODEC5F | 0, Not completed | 1, In-person |
| Change in variable name | z1x | If C5F not submitted, specify reason | FTDC5FR | 95, Physical problem|96, Cognitive/behavioral problem|97, Other|98, Verbal refusal|99, Unknown or inadequate information | c5f | If 'C5F Interpersonal Reactivity Index' not submitted, specify reason | C5FNOT | 95, Physical problem|96, Cognitive/behavioral problem|97, Other|98, Verbal refusal|99, Unknown or inadequate information |
| New variable | -- | -- | -- | -- | c6f | C6F Revised Self-monitoring Scale - Form date | FRMDATEC6F | mm/dd/yyyy or yyyy/mm/dd |
| New variable | -- | -- | -- | -- | c6f | C6F Revised Self-monitoring Scale - Examiner's initials | INITIALSC6F | Any text |
| No change | z1x | C6F Revised self-monitoring scale - language | LANGC6F | 1, English|2, Spanish | c6f | C6F Revised Self-monitoring Scale - Language | LANGC6F | 1, English|2, Spanish |
| Change in variable name and response labels | z1x | C6F Revised self-monitoring scale - submitted | FTDC6FS | 0, No | 1, Yes | c6f | C6F Revised Self-monitoring Scale - Submitted? | MODEC6F | 0, Not completed | 1, In-person |
| Change in variable name | z1x | If C6F not submitted, specify reason | FTDC6FR | 95, Physical problem|96, Cognitive/behavioral problem|97, Other|98, Verbal refusal|99, Unknown or inadequate information | c6f | If 'C6F Revised Self-monitoring Scale' not submitted, specify reason | C6FNOT | 95, Physical problem|96, Cognitive/behavioral problem|97, Other|98, Verbal refusal|99, Unknown or inadequate information |
| New variable | -- | -- | -- | -- | e2f | E2F Imaging Available - Form date | FRMDATEE2F | mm/dd/yyyy or yyyy/mm/dd |
| New variable | -- | -- | -- | -- | e2f | E2F Imaging Available - Examiner's initials | INITIALSE2F | Any text |
| No change | z1x | E2F Imaging Available - language | LANGE2F | 1, English|2, Spanish | e2f | E2F Imaging Available - Language | LANGE2F | 1, English|2, Spanish |
| New variable | -- | -- | -- | -- | e3f | E3F Imaging in Diagnosis - Form date | FRMDATEE3F | mm/dd/yyyy or yyyy/mm/dd |
| New variable | -- | -- | -- | -- | e3f | E3F Imaging in Diagnosis - Examiner's initials | INITIALSE3F | Any text |
| No change | z1x | E3F Imaging in Diagnosis - language | LANGE3F | 1, English|2, Spanish | e3f | E3F Imaging in Diagnosis - Language | LANGE3F | 1, English|2, Spanish |
Note on Form A3a (Record of Consent for Biologic Specimen Use)
If you need to submit multiple A3a forms for multiple relatives at one UDS + FTLD module visit, please note that our new system requires distinct variable names for each relative (i.e., each A3a form). You must use the original variable names appended with a number at the end (see list below for detailed examples). The NACC FTLD module REDCap project will do this for you when you indicate the number of relatives on the form. Please also note that you can submit this form for up to 5 relatives per visit.
| A3a Question | 1st Form | 2nd Form | 3rd Form | 4th Form | 5th Form |
|---|---|---|---|---|---|
| 1. What relative's consent is being recorded on this form? | FTDRELCO | FTDRELCO2 | FTDRELCO3 | FTDRELCO4 | FTDRELCO5 |
| 1. Sibling’s birth year | FTDSIBBY | FTDSIBBY2 | FTDSIBBY3 | FTDSIBBY4 | FTDSIBBY5 |
| 1. Child’s birth year | FTDCHDBY | FTDCHDBY2 | FTDCHDBY3 | FTDCHDBY4 | FTDCHDBY5 |
| 1a. I permit my sample to be stored and used in future research of neurologic disease at (home institution) | FTDSTORE | FTDSTORE2 | FTDSTORE3 | FTDSTORE4 | FTDSTORE5 |
| 1b. I permit my sample to be stored and used in future research at (home institution) to learn about, prevent, or treat other health problems. | FTDSLEAR | FTDSLEAR2 | FTDSLEAR3 | FTDSLEAR4 | FTDSLEAR5 |
| 1c. 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. | FTDCOMME | FTDCOMME2 | FTDCOMME3 | FTDCOMME4 | FTDCOMME5 |