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ID
13664
Descrição
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
Palavras-chave
Versões (14)
- 24/02/2016 24/02/2016 -
- 01/03/2016 01/03/2016 -
- 02/03/2016 02/03/2016 -
- 03/03/2016 03/03/2016 -
- 03/03/2016 03/03/2016 -
- 04/03/2016 04/03/2016 - Julian Varghese
- 07/03/2016 07/03/2016 -
- 09/03/2016 09/03/2016 -
- 09/03/2016 09/03/2016 -
- 09/03/2016 09/03/2016 -
- 10/03/2016 10/03/2016 -
- 10/03/2016 10/03/2016 -
- 13/04/2021 13/04/2021 - Dr. rer. medic Philipp Neuhaus
- 20/09/2021 20/09/2021 -
Transferido a
24 de fevereiro de 2016
DOI
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Licença
Creative Commons BY-NC 3.0
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DESCRIBE (DZNE – Clinical Register Study of neurodegenerative Disorders) CRF Diagnostic Criteria
CRF Diagnostic Criteria
- StudyEvent: ODM
Similar models
CRF Diagnostic Criteria
- StudyEvent: ODM
Name
Tipo
Description | Question | Decode (Coded Value)
Tipo de dados
Alias
date of visit
Item
Date of visit
date
C1320303 (UMLS CUI [1])
study id
Item
Study-ID:
text
C2826693 (UMLS CUI [1])
visit name
Item
Visit:
text
C2826704 (UMLS CUI [1])
current MCI
Item
Is the patient currently diagnosed with a MCI according to Winblad & Petersen 2004?
boolean
C1270972 (UMLS CUI [1,1])
C0150312 (UMLS CUI [1,2])
C0150312 (UMLS CUI [1,2])
cognitive degration
Item
Cognitive Impairment 1. Subjective deterioration of cognition observed by the patient or an informant and/or...
boolean
C1270972 (UMLS CUI [1,1])
C0854193 (UMLS CUI [1,2])
C0854193 (UMLS CUI [1,2])
psychometric test proving cognitive degradation
Item
2. Evidence of degradation of cognition in time due to psychometric tests
boolean
C1270972 (UMLS CUI [1,1])
C0033920 (UMLS CUI [1,2])
C0033920 (UMLS CUI [1,2])
everyday functioning
Item
3. Ability to perform activities of everyday living/ minimal impairment of complex instrumental everyday functions
boolean
C0562507 (UMLS CUI [1])
signs of disturbed consciousness
Item
4. No signs of disturbed consciousness, of a delirium, of a dementia or of an amnesic aphasia that cannot be explained better by other psychotic illnesses (e.g. a disorder in connection with psychotropic substances or major depression).
boolean
C0234428 (UMLS CUI [1])
C0011206 (UMLS CUI [2])
C0497327 (UMLS CUI [3])
C0011206 (UMLS CUI [2])
C0497327 (UMLS CUI [3])
wordlist
Item
Operationalization 1. Wordlist - delayed word retrieval
boolean
C0456660 (UMLS CUI [1])
visuospatial ability
Item
2. Visuospatial ability - Drawing
boolean
C0814069 (UMLS CUI [1])
C0565772 (UMLS CUI [2])
C0565772 (UMLS CUI [2])
visuospatial ability delayed
Item
3. Visuospatial ability - Delayed retrieval
boolean
C0814069 (UMLS CUI [1])
trail making test
Item
4. Trial making test A or B
boolean
C0040604 (UMLS CUI [1])
semantic or phonetic fluency
Item
5. Semantic or phonetic fluency
boolean
C0233714 (UMLS CUI [1])
object naming
Item
6. Object naming
boolean
C0451342 (UMLS CUI [1])
normal finding FAQ
Item
7. No abnormal finding FAQ
boolean
C3827007 (UMLS CUI [1,1])
C0205307 (UMLS CUI [1,2])
C0205307 (UMLS CUI [1,2])
amnesic MCI single domain
Item
Classification a. Amnesic MCI single domain (only memory)
boolean
C1270972 (UMLS CUI [1])
amnesic MCI multi domain
Item
b. Amnesic MCI multi domain (memory and one additional area)
boolean
C1270972 (UMLS CUI [1])
non-amnesic MCI single domain
Item
c. Non-amnesic MCI single domain (one area, except memory)
boolean
C1270972 (UMLS CUI [1])
non-amnesic MCI multi domain
Item
d. Non-amnesic MCI multi domain (several areas, except memory)
boolean
C1270972 (UMLS CUI [1])
Item Group
Dementia in Alzheimer's Disease (AD)
C3665464 (UMLS CUI-1)
NINCDS/ADRDA-Criteria AD diagnosis
Item
Is the patient currently diagnosed with AD according to NINCDS/ADRDA-Criteria (McKhann et al. 1984)?
boolean
C3665464 (UMLS CUI [1,1])
C2828081 (UMLS CUI [1,2])
C2828081 (UMLS CUI [1,2])
dementia
Item
I. Necessary requirements Evidence of dementia in a clinical examination including neuropsychological tests
boolean
C0497327 (UMLS CUI [1])
C0027902 (UMLS CUI [2])
C0027902 (UMLS CUI [2])
cognitive deficits
Item
Deficits in at least two cognitive areas
boolean
C0009241 (UMLS CUI [1])
progressive disturbance of memory
Item
Progressive disturbance of memory and other cognitive functions
boolean
C1864985 (UMLS CUI [1,1])
C0025260 (UMLS CUI [1,2])
C1864985 (UMLS CUI [2,1])
C0392335 (UMLS CUI [2,2])
C0025260 (UMLS CUI [1,2])
C1864985 (UMLS CUI [2,1])
C0392335 (UMLS CUI [2,2])
no consciousness disturbance
Item
No consciousness disturbance
boolean
C0424525 (UMLS CUI [1])
age at onset
Item
Onset between age of 40 and 90, mostly 65 and older
boolean
C0150907 (UMLS CUI [1])
other system- or brain diseases
Item
No evidence of other system- or brain diseases as cause
boolean
C0442893 (UMLS CUI [1])
C0006111 (UMLS CUI [2])
C0006111 (UMLS CUI [2])
progressive deterioration of specific cognitive functions
Item
II. Subsidiary Findings Progressive deterioration of specific cognitive functions, e.g. of speech (aphasia), motor activity (apraxia) and perception (agnosia)
boolean
C0854193 (UMLS CUI [1,1])
C0205329 (UMLS CUI [1,2])
C0205329 (UMLS CUI [1,2])
impairment of everyday activities and behavioral change
Item
Impairment of everyday activities and emerging of behavior modifications
boolean
C0562507 (UMLS CUI [1,1])
C0221099 (UMLS CUI [1,2])
C0542299 (UMLS CUI [2])
C0221099 (UMLS CUI [1,2])
C0542299 (UMLS CUI [2])
family history of similar disorders
Item
Family history of similar disorders (especially if neurologically proven)
boolean
C0241889 (UMLS CUI [1])
cerebral atrophy
Item
Results of additional examinations: Evidence of - progressively evolving in follow ups- cerebral atrophy due to imaging diagnostics
boolean
C0235946 (UMLS CUI [1])
normal finding or unspecific changes in EEG
Item
Normal finding or unspecific changes in EEG
boolean
C0234550 (UMLS CUI [1,1])
C0205307 (UMLS CUI [1,2])
C0234550 (UMLS CUI [2,1])
C0750540 (UMLS CUI [2,2])
C0205307 (UMLS CUI [1,2])
C0234550 (UMLS CUI [2,1])
C0750540 (UMLS CUI [2,2])
normal finding of cerebrospinal fluid
Item
Normal finding of cerebrospinal fluid
boolean
C0007806 (UMLS CUI [1,1])
C0205307 (UMLS CUI [1,2])
C0205307 (UMLS CUI [1,2])
diagnosis of Alzheimers disease
Item
III. Matching with a probable diagnosis of Alzheimer's disease Temporal stagnation in course of disease
boolean
C1848980 (UMLS CUI [1,1])
C0242656 (UMLS CUI [1,2])
C0242656 (UMLS CUI [1,2])
attendant symptoms
Item
Attendant symptoms like depression, insomnia, incontinence, illusion, hallucination, delusion, sudden aggressive outbreaks, sexual dysfunction and weight loss
boolean
C0011581 (UMLS CUI [1])
C0917801 (UMLS CUI [2])
C0021167 (UMLS CUI [3])
C0020903 (UMLS CUI [4])
C0018524 (UMLS CUI [5])
C0011253 (UMLS CUI [6])
C0001807 (UMLS CUI [7])
C0549622 (UMLS CUI [8])
C0936227 (UMLS CUI [9])
C0917801 (UMLS CUI [2])
C0021167 (UMLS CUI [3])
C0020903 (UMLS CUI [4])
C0018524 (UMLS CUI [5])
C0011253 (UMLS CUI [6])
C0001807 (UMLS CUI [7])
C0549622 (UMLS CUI [8])
C0936227 (UMLS CUI [9])
neurological distinctive feature
Item
Neurological distinctive feature (particularly in case of advanced disease) like elevated muscle tonus, myoclonus or gait disturbance
boolean
C1704258 (UMLS CUI [1,1])
C0205494 (UMLS CUI [1,2])
C0026841 (UMLS CUI [2])
C0027066 (UMLS CUI [3])
C1856566 (UMLS CUI [4])
C0205494 (UMLS CUI [1,2])
C0026841 (UMLS CUI [2])
C0027066 (UMLS CUI [3])
C1856566 (UMLS CUI [4])
epileptic seizure
Item
Epileptic seizure (in case of advanced disease)
boolean
C1411824 (UMLS CUI [1])
CT commensurate with age
Item
CT commensurate with age
boolean
C0040405 (UMLS CUI [1,1])
C0001783 (UMLS CUI [1,2])
C0001783 (UMLS CUI [1,2])
sudden apoplectic onset
Item
IV. Exclusion Criteria Sudden, apoplectic onset
boolean
C1388315 (UMLS CUI [1,1])
C1276802 (UMLS CUI [1,2])
C1276802 (UMLS CUI [1,2])
focal neurological signs
Item
Focal neurological signs like hemiparesis, sensorial failures, visual field defects or problems with coordination in early stage of disease
boolean
C0018989 (UMLS CUI [1])
C0152027 (UMLS CUI [2])
C0004134 (UMLS CUI [3])
C3887875 (UMLS CUI [4])
C0152027 (UMLS CUI [2])
C0004134 (UMLS CUI [3])
C3887875 (UMLS CUI [4])
epileptic seizures or gait disturbance
Item
Epileptic seizures or gait disturbance at onset or in early stage of disease
boolean
C1411824 (UMLS CUI [1])
C1856566 (UMLS CUI [2])
C1856566 (UMLS CUI [2])
dementia syndrome with atypical symptomatic
Item
V. Clinical possible AD Dementia syndrome with atypical symptomatic with regard to onset, course and deficit profile, in absence of other neurological, psychiatric or internal disease that could cause the dementia syndrome
boolean
C0497327 (UMLS CUI [1,1])
C0231220 (UMLS CUI [1,2])
C0231220 (UMLS CUI [1,2])
second systemic or brain disease
Item
Second systemic or brain disease that could cause dementia, but is commonly not regarded as a substantial cause
boolean
C0442893 (UMLS CUI [1])
C0006111 (UMLS CUI [2])
C0006111 (UMLS CUI [2])
progressive severe cognitive deficit
Item
Progressive severe cognitive deficit without notable different cause
boolean
C0009241 (UMLS CUI [1,1])
C0205329 (UMLS CUI [1,2])
C0205082 (UMLS CUI [1,3])
C0205329 (UMLS CUI [1,2])
C0205082 (UMLS CUI [1,3])
Item Group
Posterior cortical atrophy (PCA)
C0235946 (UMLS CUI-1)
C0205095 (UMLS CUI-2)
C0205095 (UMLS CUI-2)
PCA diagnosis
Item
Is the patient currently diagnosed with PCA according to the criteria of Mendez et.al. 2002?
boolean
C0235946 (UMLS CUI [1,1])
C0205095 (UMLS CUI [1,2])
C0205095 (UMLS CUI [1,2])
insidious onset and gradual progression
Item
Main symptoms (all symptoms have to be present) A. Insidious onset and gradual progression
boolean
C1298634 (UMLS CUI [1])
C1854645 (UMLS CUI [2])
C1854645 (UMLS CUI [2])
visual disorders
Item
B. Presentation with visual disorders while visual function intact
boolean
C0042790 (UMLS CUI [1])
prominent complex visual deficits
Item
C. Evidence of prominent complex visual deficits
boolean
C3665347 (UMLS CUI [1,1])
C0205402 (UMLS CUI [1,2])
C0439855 (UMLS CUI [1,3])
C0205402 (UMLS CUI [1,2])
C0439855 (UMLS CUI [1,3])
Balint syndrome
Item
Elements of Balint syndrome
boolean
C0270706 (UMLS CUI [1])
visual agnosia
Item
Visual agnosia
boolean
C0234502 (UMLS CUI [1])
dressing apraxia
Item
Dressing apraxis
boolean
C0234529 (UMLS CUI [1])
topographic disorientation
Item
Topographic disorientation
boolean
C0233407 (UMLS CUI [1,1])
C1639223 (UMLS CUI [1,2])
C1639223 (UMLS CUI [1,2])
relatively small deficits of memory and word fluency
Item
D. Relatively small memory deficits and word fluency deficits
boolean
C0233794 (UMLS CUI [1,1])
C1843272 (UMLS CUI [1,2])
C2018029 (UMLS CUI [2,1])
C1843272 (UMLS CUI [2,2])
C1843272 (UMLS CUI [1,2])
C2018029 (UMLS CUI [2,1])
C1843272 (UMLS CUI [2,2])
relatively good awareness of disability
Item
E. Relatively good awareness of disability with or without depression
boolean
C0424227 (UMLS CUI [1,1])
C0205170 (UMLS CUI [1,2])
C0205170 (UMLS CUI [1,2])
presenile onset
Item
Subsidiary diagnosis A. Presenile onset
boolean
C0750901 (UMLS CUI [1])
alexia
Item
B. Alexia
boolean
C0002018 (UMLS CUI [1])
Gerstmann syndrome
Item
C. Elements of Gerstmann syndrome
boolean
C0017494 (UMLS CUI [1])
ideomotor apraxia
Item
D. Ideomotor apraxia
boolean
C0234523 (UMLS CUI [1])
physical examination
Item
E. Physical examination within the norms
boolean
C0031809 (UMLS CUI [1])
impairment of perceptual functions
Item
F. Neuropsychiatric: Prominent impairment of perceptual functions
boolean
C0233746 (UMLS CUI [1])
occipitoparietal abnormality
Item
Imaging: Prominent occipitoparietal abnormality (especially in functional imaging) with relative recess of frontal and mesiotemporal regions
boolean
C1704258 (UMLS CUI [1,1])
C1184145 (UMLS CUI [1,2])
C0442030 (UMLS CUI [1,3])
C1184145 (UMLS CUI [1,2])
C0442030 (UMLS CUI [1,3])
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