ID

13951

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 (1)
  1. 17/03/2016 17/03/2016 -
Transferido a

17 de março 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 Amyotrophic lateral sclerosis functional rating scale (ALSFRS-R)

Inglês

CRF Amyotrophic lateral sclerosis functional rating scale (ALSFRS-R)

1 Formulários  
Date of visit
Descrição

Date of visit

Alias
UMLS CUI-1
C1320303
Study-ID:
Descrição

study id

Tipo de dados

text

Alias
UMLS CUI [1]
C2826693
Date of visit
Descrição

date of visit

Tipo de dados

date

Alias
UMLS CUI [1]
C1320303
Visit:
Descrição

visit name

Tipo de dados

text

Alias
UMLS CUI [1]
C2826704
ALS Functional Rating Scale
Descrição

ALS Functional Rating Scale

Alias
UMLS CUI-1
C0002736
UMLS CUI-2
C0392757
1. Speech
Descrição

speech

Tipo de dados

integer

Alias
UMLS CUI [1]
C0037817
2. Salivation
Descrição

salivation

Tipo de dados

integer

Alias
UMLS CUI [1]
C0036104
3. Swallowing
Descrição

swallowing

Tipo de dados

integer

Alias
UMLS CUI [1]
C0011167
4. Handwriting
Descrição

handwriting

Tipo de dados

integer

Alias
UMLS CUI [1]
C0018582
5. a.Cutting food without gastrostomy/PEG
Descrição

cutting food without gastrostomy

Tipo de dados

integer

Alias
UMLS CUI [1]
C3880479
5. b.Cutting food with gastrostomy/PEG
Descrição

cutting food with gastrostomy

Tipo de dados

integer

Alias
UMLS CUI [1]
C3880479
UMLS CUI [2]
C0017196
6. Dressing and hygiene
Descrição

dressing and hygiene

Tipo de dados

integer

Alias
UMLS CUI [1]
C1305428
UMLS CUI [2]
C0020405
7. Turning in bed
Descrição

turning in bed

Tipo de dados

integer

Alias
UMLS CUI [1]
C0578378
8. Walking
Descrição

walking

Tipo de dados

integer

Alias
UMLS CUI [1]
C0080331
9. Climbing stairs
Descrição

climbing stairs

Tipo de dados

integer

Alias
UMLS CUI [1]
C0429980
10. Dyspnea
Descrição

dyspnea

Tipo de dados

integer

Alias
UMLS CUI [1]
C0013404
11. Orthopnea
Descrição

orthopnea

Tipo de dados

integer

Alias
UMLS CUI [1]
C0085619
12. Respiratory insufficiency
Descrição

respiratory insufficiency

Tipo de dados

integer

Alias
UMLS CUI [1]
C0035229
Total score
Descrição

total score

Tipo de dados

integer

Alias
UMLS CUI [1,1]
C0002736
UMLS CUI [1,2]
C0392757
UMLS CUI [1,3]
C2964552
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Similar models

CRF Amyotrophic lateral sclerosis functional rating scale (ALSFRS-R)

1 Formulários
Name
Tipo
Description | Question | Decode (Coded Value)
Tipo de dados
Alias
Item Group
Date of visit
C1320303 (UMLS CUI-1)
study id
Item
Study-ID:
text
C2826693 (UMLS CUI [1])
date of visit
Item
Date of visit
date
C1320303 (UMLS CUI [1])
visit name
Item
Visit:
text
C2826704 (UMLS CUI [1])
Item Group
ALS Functional Rating Scale
C0002736 (UMLS CUI-1)
C0392757 (UMLS CUI-2)
Item
1. Speech
integer
C0037817 (UMLS CUI [1])
speech
Code List
1. Speech
CL Item
Normal speech processes (4)
CL Item
Detectable speech disturbance (3)
CL Item
Intelligible with repeating (2)
CL Item
Speech combined with nonvocal communication (1)
CL Item
Loss of useful speech (0)
Item
2. Salivation
integer
C0036104 (UMLS CUI [1])
salivation
Code List
2. Salivation
CL Item
Normal (4)
CL Item
Slight but definite excess of saliva in mouth; may have nighttime drooling (3)
CL Item
Moderately excessive saliva; may have minimal drooling (2)
CL Item
Marked excess of saliva with some drooling (1)
CL Item
Marked drooling; requires constant tissue or handkerchief (0)
Item
3. Swallowing
integer
C0011167 (UMLS CUI [1])
swallowing
Code List
3. Swallowing
CL Item
Normal eating habits (4)
CL Item
Early eating problems-occasional choking (3)
CL Item
Dietary consistency changes (2)
CL Item
Needs supplemental tube feeding (1)
CL Item
NPO (exclusively parenteral or enteral feeding) (0)
Item
4. Handwriting
integer
C0018582 (UMLS CUI [1])
handwriting
Code List
4. Handwriting
CL Item
Normal (4)
CL Item
Slow or sloppy; all words are legible (3)
CL Item
Not all words are legible (2)
CL Item
Able to grip pen but unable to write (1)
CL Item
Unable to grip pen (0)
Item
5. a.Cutting food without gastrostomy/PEG
integer
C3880479 (UMLS CUI [1])
cutting food with gastrostom
Code List
5. a.Cutting food without gastrostomy/PEG
CL Item
Normal (4)
CL Item
Somewhat slow and clumsy, but no help needed (3)
CL Item
Can cut most foods, although clumsy and slow; some help needed (2)
CL Item
Food must be cut by someone, but can still feed slowly (1)
CL Item
Needs to be fed (0)
Item
5. b.Cutting food with gastrostomy/PEG
integer
C3880479 (UMLS CUI [1])
C0017196 (UMLS CUI [2])
cutting food with gastrostomy
Code List
5. b.Cutting food with gastrostomy/PEG
CL Item
Normal (4)
CL Item
Clumsy but able to perform all manipulations independently (3)
CL Item
Some help needed with closures and fasteners (2)
CL Item
Provides minimal assistance to caregiver (1)
CL Item
Unable to perform any aspect of task (0)
Item
6. Dressing and hygiene
integer
C1305428 (UMLS CUI [1])
C0020405 (UMLS CUI [2])
dressing and hygiene
Code List
6. Dressing and hygiene
CL Item
Normal function (4)
CL Item
Independent and complete self-care with effort or decreased efficiency (3)
CL Item
Intermittent assistance or substitute methods (2)
CL Item
Needs attendant for self-care (1)
CL Item
Total dependence (0)
Item
7. Turning in bed
integer
C0578378 (UMLS CUI [1])
turning in bed
Code List
7. Turning in bed
CL Item
Normal (4)
CL Item
Somewhat slow and clumsy, but no help needed (3)
CL Item
Can turn alone or adjust sheets, but with great difficulty (2)
CL Item
Can initiate, but not turn or adjust sheets alone (1)
CL Item
Helpless (0)
Item
8. Walking
integer
C0080331 (UMLS CUI [1])
walking
Code List
8. Walking
CL Item
Normal (4)
CL Item
Early ambulation difficulties (3)
CL Item
Walks with assistance (2)
CL Item
Non-ambulatory functional movement only (1)
CL Item
No purposeful leg movement (0)
Item
9. Climbing stairs
integer
C0429980 (UMLS CUI [1])
climbing stairs
Code List
9. Climbing stairs
CL Item
Normal (4)
CL Item
Slow (3)
CL Item
Mild unsteadiness or fatigue (2)
CL Item
Needs assistance (1)
CL Item
Cannot do (0)
Item
10. Dyspnea
integer
C0013404 (UMLS CUI [1])
dyspnea
Code List
10. Dyspnea
CL Item
None (4)
CL Item
Occurs when walking (3)
CL Item
Occurs with one or more of the following: eating, bathing, dressing (ADL) (2)
CL Item
Occurs at rest, difficulty breathing when either sitting or lying (1)
CL Item
Significant difficulty, considering using mechanical respiratory support (0)
Item
11. Orthopnea
integer
C0085619 (UMLS CUI [1])
orthopnea
Code List
11. Orthopnea
CL Item
None (4)
CL Item
Some difficulty sleeping at night due to shortness of breath. Does not routinely use more than two pillows (3)
CL Item
Needs extra pillow in order to sleep (more than two) (2)
CL Item
Can only sleep sitting up (1)
CL Item
Unable to sleep (0)
Item
12. Respiratory insufficiency
integer
C0035229 (UMLS CUI [1])
respiratory insufficiency
Code List
12. Respiratory insufficiency
CL Item
None (4)
CL Item
Intermittent use of BiPAP (3)
CL Item
Continuous use of BiPAP (2)
CL Item
Continuous use of BiPAP during the night and day (1)
CL Item
Invasive mechanical ventilation by intubation or tracheostomy (0)
total score
Item
Total score
integer
C0002736 (UMLS CUI [1,1])
C0392757 (UMLS CUI [1,2])
C2964552 (UMLS CUI [1,3])
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