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Beschreibung
Background and Purpose: The purpose of the DESCRIBE study is to document the natural course of diseases in context of medical care of neurodegenerative disorders as well as cerebrovascular diseases and to perform phenotyping of the test persons. Disease-spanning analyses of the measured clincial data, the results of the imaging processes, results of the analysis of the biometerials including genetic analysis are planed. Principal Investigator: Prof. Klockgether, Dr. Spottke DZNE, Bonn. Source: DESCRIBE-Studie http://www.dzne.de/forschung/forschungsbereiche/klinische-forschung/studien/describe-bn006.html Participating Study Sites: Berlin, Bonn, Göttingen, Dresden, Köln, Magdeburg, München, Rostock/Greifswald, Tübingen
Link
http://www.dzne.de/forschung/forschungsbereiche/klinische-forschung/studien/describe-bn006.html
Stichworte
Versionen (2)
- 17.03.16 17.03.16 -
- 18.03.16 18.03.16 -
Hochgeladen am
17. März 2016
DOI
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Lizenz
Creative Commons BY-NC 3.0
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DESCRIBE (DZNE – Clinical Register Study of neurodegenerative Disorders) CRF Cognition Module Baseline
CRF Cognition Module Baseline
- StudyEvent: ODM
Ähnliche Modelle
CRF Cognition Module Baseline
- StudyEvent: ODM
Name
Typ
Description | Question | Decode (Coded Value)
Datentyp
Alias
Item Group
Anamnesis cognition 1: Subjective cognitive decline
memory impairment
Item
1. Did your memory changed for the worse?
boolean
C0233794 (UMLS CUI [1])
memory impairment worry
Item
A. If 'yes', does this make you worry?
boolean
C0233794 (UMLS CUI [1,1])
C0233481 (UMLS CUI [1,2])
C0233481 (UMLS CUI [1,2])
Item
B. If 'yes', when did deterioration start?
integer
C0233794 (UMLS CUI [1,1])
C0868945 (UMLS CUI [1,2])
C0332162 (UMLS CUI [1,3])
C0868945 (UMLS CUI [1,2])
C0332162 (UMLS CUI [1,3])
CL Item
within the last six month (1)
CL Item
from six month ago on to two years ago (2)
CL Item
from two to five years ago (3)
CL Item
more than five years ago (4)
CL Item
not specified (5)
memory impairment age
Item
C. If 'yes', is your ability in this section worse than of other persons your age?
boolean
C0233794 (UMLS CUI [1,1])
C1707455 (UMLS CUI [1,2])
C0027362 (UMLS CUI [1,3])
C1707455 (UMLS CUI [1,2])
C0027362 (UMLS CUI [1,3])
memory impairment consult
Item
D. If 'yes', have you ever consulted or talked to your doctor about these problems?
boolean
C0233794 (UMLS CUI [1,1])
C3693724 (UMLS CUI [1,2])
C3693724 (UMLS CUI [1,2])
memory impairment consult time
Item
E. If 'yes', when for the first time?
integer
C0233794 (UMLS CUI [1,1])
C3693724 (UMLS CUI [1,2])
C3693724 (UMLS CUI [1,2])
word finding
Item
2. Do you have to grope for words more often than before?
boolean
C0454643 (UMLS CUI [1])
word finding worry
Item
A. If 'yes', does this make you worry?
boolean
C0454643 (UMLS CUI [1,1])
C0233481 (UMLS CUI [1,2])
C0233481 (UMLS CUI [1,2])
Item
B. If 'yes', when did deterioration start?
integer
C0454643 (UMLS CUI [1,1])
C0868945 (UMLS CUI [1,2])
C0332162 (UMLS CUI [1,3])
C0868945 (UMLS CUI [1,2])
C0332162 (UMLS CUI [1,3])
CL Item
within the last six month (1)
CL Item
from six month ago on to two years ago (2)
CL Item
from two to five years ago (3)
CL Item
more than five years ago (4)
CL Item
not specified (5)
word finding age
Item
C. If 'yes', is your ability in this section worse than of other persons your age?
boolean
C0454643 (UMLS CUI [1,1])
C1707455 (UMLS CUI [1,2])
C0027362 (UMLS CUI [1,3])
C1707455 (UMLS CUI [1,2])
C0027362 (UMLS CUI [1,3])
word finding consult
Item
D. If 'yes', have you ever consulted or talked to your doctor about these problems?
boolean
C0454643 (UMLS CUI [1,1])
C3693724 (UMLS CUI [1,2])
C3693724 (UMLS CUI [1,2])
word finding consult time
Item
E. If 'yes', when for the first time?
integer
C0454643 (UMLS CUI [1,1])
C3693724 (UMLS CUI [1,2])
C3693724 (UMLS CUI [1,2])
problems planning
Item
3. Do you have more often problems planning forward-thinking or keeping order?
boolean
C0423907 (UMLS CUI [1])
problems planning worry
Item
A. If 'yes', does this make you worry?
boolean
C0423907 (UMLS CUI [1,1])
C0233481 (UMLS CUI [1,2])
C0233481 (UMLS CUI [1,2])
Item
B. If 'yes', when did deterioration start?
integer
C0423907 (UMLS CUI [1,1])
C0868945 (UMLS CUI [1,2])
C0332162 (UMLS CUI [1,3])
C0868945 (UMLS CUI [1,2])
C0332162 (UMLS CUI [1,3])
CL Item
within the last six month (1)
CL Item
from six month ago on to two years ago (2)
CL Item
from two to five years ago (3)
CL Item
more than five years ago (4)
CL Item
not specified (5)
problems planning age
Item
C. If 'yes', is your ability in this section worse than of other persons your age?
boolean
C0423907 (UMLS CUI [1,1])
C1707455 (UMLS CUI [1,2])
C0027362 (UMLS CUI [1,3])
C1707455 (UMLS CUI [1,2])
C0027362 (UMLS CUI [1,3])
problems planning consult
Item
D. If 'yes', have you ever consulted or talked to your doctor about these problems?
boolean
C0423907 (UMLS CUI [1,1])
C3693724 (UMLS CUI [1,2])
C3693724 (UMLS CUI [1,2])
problems planning consult time
Item
E. If 'yes', when for the first time?
integer
making mistakes
Item
4. Do you make mistakes more frequently, if you not fully concentrate on one thing?
boolean
C1821936 (UMLS CUI [1])
making mistakes worry
Item
A. If 'yes', does this make you worry?
boolean
C1821936 (UMLS CUI [1,1])
C0233481 (UMLS CUI [1,2])
C0233481 (UMLS CUI [1,2])
Item
B. If 'yes', when did deterioration start?
integer
C1821936 (UMLS CUI [1,1])
C0868945 (UMLS CUI [1,2])
C0332162 (UMLS CUI [1,3])
C0868945 (UMLS CUI [1,2])
C0332162 (UMLS CUI [1,3])
CL Item
within the last six month (1)
CL Item
from six month ago on to two years ago (2)
CL Item
from two to five years ago (3)
CL Item
more than five years ago (4)
CL Item
not specified (5)
making mistakes age
Item
C. If 'yes', is your ability in this section worse than of other persons your age?
boolean
C1821936 (UMLS CUI [1,1])
C1707455 (UMLS CUI [1,2])
C0027362 (UMLS CUI [1,3])
C1707455 (UMLS CUI [1,2])
C0027362 (UMLS CUI [1,3])
making mistakes consult
Item
D. If 'yes', have you ever consulted or talked to your doctor about these problems?
boolean
C1821936 (UMLS CUI [1,1])
C3693724 (UMLS CUI [1,2])
C3693724 (UMLS CUI [1,2])
making mistakes consult time
Item
E. If 'yes', when for the first time?
integer
C1821936 (UMLS CUI [1,1])
C3693724 (UMLS CUI [1,2])
C3693724 (UMLS CUI [1,2])
other mental deterioation
Item
5. Did you notice any other mental deterioration? In which sections?
boolean
C0234985 (UMLS CUI [1,1])
C0205394 (UMLS CUI [1,2])
C0205394 (UMLS CUI [1,2])
other mental deterioation name
Item
Other mental deterioation:
text
C0234985 (UMLS CUI [1,1])
C0205394 (UMLS CUI [1,2])
C0205394 (UMLS CUI [1,2])
other mental deterioation worry
Item
A. If 'yes', does this make you worry?
boolean
C0234985 (UMLS CUI [1,1])
C0205394 (UMLS CUI [1,2])
C0233481 (UMLS CUI [1,3])
C0205394 (UMLS CUI [1,2])
C0233481 (UMLS CUI [1,3])
Item
B. If 'yes', when did deterioration start?
integer
C0234985 (UMLS CUI [1,1])
C0205394 (UMLS CUI [1,2])
C0868945 (UMLS CUI [1,3])
C0332162 (UMLS CUI [1,4])
C0205394 (UMLS CUI [1,2])
C0868945 (UMLS CUI [1,3])
C0332162 (UMLS CUI [1,4])
CL Item
within the last six month (1)
CL Item
from six month ago on to two years ago (2)
CL Item
from two to five years ago (3)
CL Item
more than five years ago (4)
CL Item
not specified (5)
other mental deterioation age
Item
C. If 'yes', is your ability in this section worse than of other persons your age?
boolean
C0234985 (UMLS CUI [1,1])
C0205394 (UMLS CUI [1,2])
C1707455 (UMLS CUI [1,3])
C0027362 (UMLS CUI [1,4])
C0205394 (UMLS CUI [1,2])
C1707455 (UMLS CUI [1,3])
C0027362 (UMLS CUI [1,4])
other mental deterioation consult
Item
D. If 'yes', have you ever consulted or talked to your doctor about these problems?
boolean
C0234985 (UMLS CUI [1,1])
C0205394 (UMLS CUI [1,2])
C3693724 (UMLS CUI [1,3])
C0205394 (UMLS CUI [1,2])
C3693724 (UMLS CUI [1,3])
other mental deterioation consult time
Item
E. If 'yes', when for the first time?
integer
C0234985 (UMLS CUI [1,1])
C0205394 (UMLS CUI [1,2])
C3693724 (UMLS CUI [1,3])
C0205394 (UMLS CUI [1,2])
C3693724 (UMLS CUI [1,3])
Item Group
Anamnesis cognition 2: Observed cognitive decline
Item
Presence of informant (Questions may be asked while participant is present)
text
C3842888 (UMLS CUI [1])
Code List
Presence of informant (Questions may be asked while participant is present)
CL Item
no informant present (no informant present)
CL Item
participant refuses interview with relative (participant refuses interview with relative)
CL Item
Spouse (Spouse)
CL Item
Child (Child)
CL Item
Brother/Sister (Brother/Sister)
CL Item
Friend (Friend)
CL Item
Other attendant (Other attendant)
memory impairment informant
Item
1. Did the memory of the participant change for the worse?
boolean
C0233794 (UMLS CUI [1])
Item
Start of deterioation:
integer
C0233794 (UMLS CUI [1,1])
C0868945 (UMLS CUI [1,2])
C0332162 (UMLS CUI [1,3])
C0868945 (UMLS CUI [1,2])
C0332162 (UMLS CUI [1,3])
CL Item
within the last six month (1)
CL Item
from six month ago on to two years ago (2)
CL Item
from two to five years ago (3)
CL Item
more than five years ago (4)
CL Item
not specified (5)
word finding informant
Item
2. Does the participant have frequently problems finding words?
boolean
C0454643 (UMLS CUI [1])
Item
Start of deterioation:
integer
C0454643 (UMLS CUI [1,1])
C0868945 (UMLS CUI [1,2])
C0332162 (UMLS CUI [1,3])
C0868945 (UMLS CUI [1,2])
C0332162 (UMLS CUI [1,3])
CL Item
within the last six month (1)
CL Item
from six month ago on to two years ago (2)
CL Item
from two to five years ago (3)
CL Item
more than five years ago (4)
CL Item
not specified (5)
problems planning informant
Item
3. Does the participant have more often problems planning forward-thinking or keeping order?
boolean
C0423907 (UMLS CUI [1])
Item
Start of deterioation:
integer
C0423907 (UMLS CUI [1,1])
C0868945 (UMLS CUI [1,2])
C0332162 (UMLS CUI [1,3])
C0868945 (UMLS CUI [1,2])
C0332162 (UMLS CUI [1,3])
CL Item
within the last six month (1)
CL Item
from six month ago on to two years ago (2)
CL Item
from two to five years ago (3)
CL Item
more than five years ago (4)
CL Item
not specified (5)
making mistakes informant
Item
4. Does the participant make mistakes more frequently, if he not fully concentrates on one thing?
boolean
C1821936 (UMLS CUI [1])
Item
Start of deterioation:
integer
C1821936 (UMLS CUI [1,1])
C0868945 (UMLS CUI [1,2])
C0332162 (UMLS CUI [1,3])
C0868945 (UMLS CUI [1,2])
C0332162 (UMLS CUI [1,3])
CL Item
within the last six month (1)
CL Item
from six month ago on to two years ago (2)
CL Item
from two to five years ago (3)
CL Item
more than five years ago (4)
CL Item
not specified (5)
other mental deterioation informant
Item
5. Did you notice any other mental deterioration? In which sections?
boolean
C0234985 (UMLS CUI [1,1])
C0205394 (UMLS CUI [1,2])
C0205394 (UMLS CUI [1,2])
other mental deterioation name informant
Item
Other mental deterioation:
text
C0234985 (UMLS CUI [1,1])
C0205394 (UMLS CUI [1,2])
C0205394 (UMLS CUI [1,2])
Item
Start of deterioation:
integer
C0234985 (UMLS CUI [1,1])
C0205394 (UMLS CUI [1,2])
C0868945 (UMLS CUI [1,3])
C0332162 (UMLS CUI [1,4])
C0205394 (UMLS CUI [1,2])
C0868945 (UMLS CUI [1,3])
C0332162 (UMLS CUI [1,4])
CL Item
within the last six month (1)
CL Item
from six month ago on to two years ago (2)
CL Item
from two to five years ago (3)
CL Item
more than five years ago (4)
CL Item
not specified (5)
personality change
Item
6. Did you notice a change of behavior or personality of the participant?
boolean
C0240735 (UMLS CUI [1])
Item
Start of change:
integer
C0240735 (UMLS CUI [1,1])
C0868945 (UMLS CUI [1,2])
C0332162 (UMLS CUI [1,3])
C0868945 (UMLS CUI [1,2])
C0332162 (UMLS CUI [1,3])
CL Item
within the last six month (1)
CL Item
from six month ago on to two years ago (2)
CL Item
from two to five years ago (3)
CL Item
more than five years ago (4)
CL Item
not specified (5)
orientation in time
Item
1. Orientation 1.1. Orientation in time
integer
C0451306 (UMLS CUI [1])
C0599544 (UMLS CUI [2])
C0599544 (UMLS CUI [2])
orientation to place
Item
1.2. Orientation to place
integer
C0451306 (UMLS CUI [1])
C2370999 (UMLS CUI [2])
C2370999 (UMLS CUI [2])
retention in memory
Item
2. Retention in memory
integer
C0451306 (UMLS CUI [1])
C0598851 (UMLS CUI [2])
C0598851 (UMLS CUI [2])
attention
Item
3. Attention
integer
C0451306 (UMLS CUI [1])
C0004268 (UMLS CUI [2])
C0004268 (UMLS CUI [2])
memory
Item
4. Powers of recollection
integer
C0451306 (UMLS CUI [1])
C0025260 (UMLS CUI [2])
C0025260 (UMLS CUI [2])
speech
Item
5. Speech
integer
C0451306 (UMLS CUI [1])
C0037817 (UMLS CUI [2])
C0037817 (UMLS CUI [2])
drawing
Item
6. Drawing
integer
C0451306 (UMLS CUI [1])
C0013113 (UMLS CUI [2])
C0013113 (UMLS CUI [2])
total score MMSE
Item
integer
C2225229 (UMLS CUI [1])
CL Item
No impairment (speech in normal sound level is understandable, no hearing device) (No impairment (speech in normal sound level is understandable, no hearing device))
CL Item
Mild impairment (only load speech can be understood, hearing aid device necessary) (Mild impairment (only load speech can be understood, hearing aid device necessary))
CL Item
Severe impairment (only if spoken out very loudly speech can be understood, communication very difficult) (Severe impairment (only if spoken out very loudly speech can be understood, communication very difficult))
CL Item
Extreme impairment/ loss of hearing (almost nothing/nothing can be understood) (Extreme impairment/ loss of hearing (almost nothing/nothing can be understood))