ID

14441

Description

NINDS Common Data Elements (Clinical milestones and events Amyotrophic Lateral Sclerosis) Used from the National Institute of Neurological Disorders and Stroke Common Data Elements (https://www.commondataelements.ninds.nih.gov/) References: Grinnon ST, Miller K, Marler JR, Lu Y, Stout A, Odenkirchen J, Kunitz S. National Institute of Neurological Disorders and Stroke Common Data Element Project - approach and methods. Clin Trials. 2012;9(3):322-9.

Link

https://www.commondataelements.ninds.nih.gov/

Keywords

Versions (1)
  1. 4/15/16 4/15/16 -
Uploaded on

April 15, 2016

DOI

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License

Creative Commons BY-NC 3.0
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NINDS CDE Clinical Milestones and Events Amyotrophic Lateral Sclerosis

English

Clinical Milestones and Events

1 forms  
Clinical Milestones and Events Data Collection Table
Description

Clinical Milestones and Events Data Collection Table

Noninvasive ventilation (NIV) utilized
Description

Noninvasive ventilation

Data type

integer

Alias
UMLS CUI [1]
C1997883
Date of event
Description

List all, as applicable (DD/M M/YYYY)

Data type

date

Alias
UMLS CUI [1,1]
C0011008
UMLS CUI [1,2]
C2745955
Loss of speech
Description

Loss of speech

Data type

integer

Alias
UMLS CUI [1]
C0542223
Date of event
Description

List all, as applicable (DD/M M/YYYY)

Data type

date

Alias
UMLS CUI [1,1]
C0011008
UMLS CUI [1,2]
C2745955
Loss of ambulation
Description

Loss of ambulation

Data type

integer

Alias
UMLS CUI [1]
C2678024
Date of event
Description

List all, as applicable (DD/M M/YYYY)

Data type

date

Alias
UMLS CUI [1,1]
C0011008
UMLS CUI [1,2]
C2745955
Percutaneous endoscopic gastrostomy /Feeding tube placement
Description

Percutaneous endoscopic gastrostomy

Data type

integer

Alias
UMLS CUI [1]
C0176751
Date of event
Description

List all, as applicable (DD/M M/YYYY)

Data type

date

Alias
UMLS CUI [1,1]
C0011008
UMLS CUI [1,2]
C2745955
Tracheostomy performed
Description

Tracheostomy

Data type

integer

Alias
UMLS CUI [1]
C0040590
Date of event
Description

List all, as applicable (DD/M M/YYYY)

Data type

date

Alias
UMLS CUI [1,1]
C0011008
UMLS CUI [1,2]
C2745955
Death
Description

*If participant/ subject died, complete Death CRF

Data type

integer

Alias
UMLS CUI [1]
C0011065
Clinical Events and Falls Data Collection Grid
Description

Clinical Events and Falls Data Collection Grid

Day of week
Description

Day of week

Data type

integer

Alias
UMLS CUI [1]
C0585023
Date
Description

Date

Data type

date

Alias
UMLS CUI [1]
C0011008
Falls,near falling
Description

Falls

Data type

integer

Alias
UMLS CUI [1]
C0085639
Near falling: if occurred, how many times?
Description

Falls

Data type

integer

Alias
UMLS CUI [1]
C0085639
Falls:if occured, how many times?
Description

Falls

Data type

integer

Alias
UMLS CUI [1]
C0085639
Clinical Events Cramps Data Collection Grid
Description

Clinical Events Cramps Data Collection Grid

Day of week
Description

Day of week

Data type

integer

Alias
UMLS CUI [1]
C0585023
Date
Description

Date

Data type

date

Alias
UMLS CUI [1]
C0011008
Cramps
Description

Cramps

Data type

boolean

Alias
UMLS CUI [1]
C0026821
If cramps occured, how many times (each day of occurence)
Description

Cramps

Data type

integer

Alias
UMLS CUI [1]
C0026821
Global rating of cramp severity over the period
Description

Cramp severity

Data type

integer

Alias
UMLS CUI [1,1]
C0026821
UMLS CUI [1,2]
C0457451
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Similar models

Clinical Milestones and Events

1 forms
Name
Type
Description | Question | Decode (Coded Value)
Data type
Alias
Item Group
Clinical Milestones and Events Data Collection Table
Item
Noninvasive ventilation (NIV) utilized
integer
C1997883 (UMLS CUI [1])
Noninvasive ventilation
Code List
Noninvasive ventilation (NIV) utilized
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
Date of event
Item
Date of event
date
C0011008 (UMLS CUI [1,1])
C2745955 (UMLS CUI [1,2])
Item
Loss of speech
integer
C0542223 (UMLS CUI [1])
Noninvasive ventilation
Code List
Loss of speech
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
Date of event
Item
Date of event
date
C0011008 (UMLS CUI [1,1])
C2745955 (UMLS CUI [1,2])
Item
Loss of ambulation
integer
C2678024 (UMLS CUI [1])
Noninvasive ventilation
Code List
Loss of ambulation
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
Date of event
Item
Date of event
date
C0011008 (UMLS CUI [1,1])
C2745955 (UMLS CUI [1,2])
Item
Percutaneous endoscopic gastrostomy /Feeding tube placement
integer
C0176751 (UMLS CUI [1])
Noninvasive ventilation
Code List
Percutaneous endoscopic gastrostomy /Feeding tube placement
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
Date of event
Item
Date of event
date
C0011008 (UMLS CUI [1,1])
C2745955 (UMLS CUI [1,2])
Item
Tracheostomy performed
integer
C0040590 (UMLS CUI [1])
Noninvasive ventilation
Code List
Tracheostomy performed
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
Date of event
Item
Date of event
date
C0011008 (UMLS CUI [1,1])
C2745955 (UMLS CUI [1,2])
Item
Death
integer
C0011065 (UMLS CUI [1])
Noninvasive ventilation
Code List
Death
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
Item Group
Clinical Events and Falls Data Collection Grid
Item
Day of week
integer
C0585023 (UMLS CUI [1])
Day of week
Code List
Day of week
CL Item
Monday (1)
CL Item
Tuesday (2)
CL Item
Wednesday (3)
CL Item
Thursday (4)
CL Item
Friday (5)
CL Item
Saturday (6)
CL Item
Sunday (7)
Date
Item
Date
date
C0011008 (UMLS CUI [1])
Item
Falls,near falling
integer
C0085639 (UMLS CUI [1])
Falls
Code List
Falls,near falling
CL Item
No Falls (1)
CL Item
Near Falls (2)
CL Item
Falls (3)
Falls
Item
Near falling: if occurred, how many times?
integer
C0085639 (UMLS CUI [1])
Falls
Item
Falls:if occured, how many times?
integer
C0085639 (UMLS CUI [1])
Item Group
Clinical Events Cramps Data Collection Grid
Item
Day of week
integer
C0585023 (UMLS CUI [1])
Day of week
Code List
Day of week
CL Item
Monday (1)
CL Item
Tuesday (2)
CL Item
Wednesday (3)
CL Item
Thursday (4)
CL Item
Friday (5)
CL Item
Saturday (6)
CL Item
Sunday (7)
Date
Item
Date
date
C0011008 (UMLS CUI [1])
Cramps
Item
Cramps
boolean
C0026821 (UMLS CUI [1])
Cramps
Item
If cramps occured, how many times (each day of occurence)
integer
C0026821 (UMLS CUI [1])
Item
Global rating of cramp severity over the period
integer
C0026821 (UMLS CUI [1,1])
C0457451 (UMLS CUI [1,2])
Cramp severity
Code List
Global rating of cramp severity over the period
CL Item
Activity interrupted by severe cramps (4 )
CL Item
More than one cramp per day, or seven per week (3 )
CL Item
Spontaneous cramps one to seven times weekly (2 )
CL Item
Rare cramps, related to voluntary muscle activity (1 )
CL Item
None (0 )
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