Amyloid Disclosure Visit data. More information is available at https://adni.loni.usc.edu/data-samples/adni-data/
Usage
data(AMYDISC)Details
ORIGPROT character Original study protocol , with options: ADNI3, ADNI4, ADNIGO, ADNI1, ADNI2
COLPROT factor Study protocol of data collection , with levels: ADNI1, ADNIGO, ADNI2, ADNI3, ADNI4
PTID character Participant ID
RID numeric Participant roster ID Range value: 21, ..., 10762
VISCODE character Visit code , with options: 4_init, 4_bl, 4_m12
VISCODE2 character Translated visit code
VISDATE Assessment EXAMDATE when present; otherwise Registry EXAMDATE Date: YYY-MM-DD
DONE character Was an amyloid PET disclosure event conducted? 0=No ; 1=Yes Decoded Value: Yes
DISC character Was amyloid PET result disclosed to the participant? 0=No ; 1=Yes Decoded Value: Yes
DISCND character If no, please explain why: 1=Participant not psychologically well ; 2=Participant's study partner not available (Study partners are required to attend for MCI and DEM participants) ; 3=Other Decoded Value: Yes
OUTCOME character What was the amyloid PET scan result? 0=Non-Elevated ; 1=Elevated Decoded Value: Yes
SOURCE character In what setting was the disclosure conducted? 1=Remotely ; 2=In-Person Decoded Value: Yes
PTAGE numeric How long did the disclosure visit last? Range value: 5, ..., 90
JOINDISC character Did someone join the participant at the visit? 0=No ; 1=Yes Decoded Value: Yes
JOINNUM numeric If yes, how many others joined the participant at the visit? Range value: 1, ..., 3
JOINSPCY character If yes, was their relationship to the participant? 1=Partner/spouse ; 2=Child/Child-In-Law ; 3=Sibling ; 4=Other relative ; 5=Friend ; 6=Other Decoded Value: Yes
PTGRASP character Please rate this participant's understanding of their amyloid PET scan result. 1=Inadequate understanding ; 2=Marginal understanding ; 3=Adequate understanding Decoded Value: Yes
SPGRASP character If there was an ADNI study partner present during this visit, please rate their understanding of the amyloid result. 1=Inadequate understanding ; 2=Marginal understanding ; 3=Adequate understanding ; 4=Not applicable – no study partner was present Decoded Value: Yes
PTREACT character Which of the following terms best describes this participant's overall emotional reaction to this visit? 1=Overall positive ; 2=Overall neutral ; 3=Overall mixed (both positive and negative) ; 4=Overall negative Decoded Value: Yes
SPREACT character If there was an ADNI study partner present, which of the following terms best describes this study partner's overall emotional reaction to this visit? 1=Overall positive ; 2=Overall neutral ; 3=Overall mixed (both positive and negative) ; 4=Overall negative ; 5=Not applicable – no study partner was present Decoded Value: Yes
TOPICS character Which of the following topics did you discuss with this participant? 1=Other risk factors (e.g., age, sex, family history) ; 10=Other ; 2=Meaning of the result ; 3=PET scan image (i.e., showed participant their image) ; 4=Mean cortical SUVR ; 5=PET read CRF ; 6=Emotional impact of learning this information ; 7=Potential stigma when sharing this result with others ; 8=Potential discrimination (e.g., employment, insurance, housing) ; 9=Novel therapies for AD Decoded Value: Yes
CHAL character Did you experience any challenges during this visit, including in your discussion of any of the above? 0=No ; 1=Yes Decoded Value: Yes
PTREAD character How confident did you feel assessing this participant's readiness to receive their result? 1=Not at all confident ; 2=A little confident ; 3=Somewhat confident ; 4=Confident ; 5=Very confident Decoded Value: Yes
PTDISCL character How confident did you feel disclosing to this participant? 1=Not at all confident ; 2=A little confident ; 3=Somewhat confident ; 4=Confident ; 5=Very confident Decoded Value: Yes
PTQSTNS character How confident did you feel answering this participant's questions? 1=Not at all confident ; 2=A little confident ; 3=Somewhat confident ; 4=Confident ; 5=Very confident Decoded Value: Yes
VSTRESULT character Overall, how did this visit go? 1=Poor ; 2=Fair ; 3=Good ; 4=Very good ; 5=Excellent Decoded Value: Yes
ID numeric Record ID Range value: 3900, ..., 106817
SITEID numeric Site ID Range value: 2, ..., 941
USERDATE User Create Date Date: YYY-MM-DD
USERDATE2 User Last Modify Date Date: YYY-MM-DD
DD_CRF_VERSION_LABEL character CRF Version Label , with options: v1
LANGUAGE_CODE character Language Code e=English Decoded Value: Yes
HAS_QC_ERROR character Has Quality Check Error 0=Does not have QC error or QC error has been approved ; 1=Has QC error Decoded Value: Yes
update_stamp POSIXct: YYY-MM-DD