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ID
14886
Description
NINDS Common Data Elements (Activities of Daily Living/Performance; Friedreich´s Ataxia) 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)
- 5/4/16 5/4/16 -
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May 4, 2016
DOI
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License
Creative Commons BY-NC 3.0
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NINDS CDE Activities of Daily Living/Performance Friedreich´s Ataxia
Activities of Daily Living/Performance
- StudyEvent: ODM
Similar models
Activities of Daily Living/Performance
- StudyEvent: ODM
Name
Type
Description | Question | Decode (Coded Value)
Data type
Alias
Item
Indicate the description that reflects the participants/ subjects current level of speech
integer
C0846595 (UMLS CUI [1])
Code List
Indicate the description that reflects the participants/ subjects current level of speech
CL Item
Normal (1)
CL Item
Mildly affected; no difficulty being understood (2)
CL Item
Moderately affected; sometimes asked to repeat statements (3)
CL Item
Severely affected; frequently asked to repeat statements (4)
CL Item
Unintelligible most of the time (5)
Item
Indicate the description that reflects the participants/subjects current level of swallowing
integer
C1321019 (UMLS CUI [1])
Code List
Indicate the description that reflects the participants/subjects current level of swallowing
CL Item
Normal (1)
CL Item
Rare choking (less than once a month) (2)
CL Item
Frequent choking (less than once a week, greater than once a month) (3)
CL Item
Requires modified food or chokes multiple times a week or subject avoids certain foods (4)
CL Item
Requires NG tube or gastrostomy feedings (5)
Item
Indicate the description that reflects the participants/subjects current level of functioning for cutting food/ use of items
integer
C0935587 (UMLS CUI [1,1])
C0566460 (UMLS CUI [1,2])
C0566460 (UMLS CUI [1,2])
Code List
Indicate the description that reflects the participants/subjects current level of functioning for cutting food/ use of items
CL Item
Normal (1)
CL Item
Somewhat slow and clumsy, but no help needed (2)
CL Item
Clumsy and slow, but can cut most foods with some help needed or needs assistance when in a hurry (3)
CL Item
Food must still be cut by someone, but can still feed self slowly (4)
CL Item
Needs to be fed (5)
Item
Indicate the description that reflects the participants/subjects current level of dressing
integer
C0518459 (UMLS CUI [1])
Code List
Indicate the description that reflects the participants/subjects current level of dressing
CL Item
Normal (1)
CL Item
Somewhat slow, but no help needed (2)
CL Item
Occasional assistance with buttoning, getting arms in sleeves, etc. or has to modify activity in some way (e.g. having to sit to get dressed; use Velcro for shoes, stop wearing ties, etc.) (3)
CL Item
Considerable help required but can do some things alone (4)
CL Item
Helpless (5)
Item
Indicate the description that reflects the participants/subjects current level of personal hygiene
integer
C0518462 (UMLS CUI [1])
Code List
Indicate the description that reflects the participants/subjects current level of personal hygiene
CL Item
Normal (1)
CL Item
Somewhat slow, but no help needed (2)
CL Item
Very slow hygiene care or has need for devices such as special grab bars, tub bench, shower chair, etc. (3)
CL Item
Requires personal help with washing, brushing teeth, combing hair or using toilet (4)
CL Item
Fully dependent (bed-bound) (5)
Item
Indicate the description that reflects the participants/subjects current rate of falls
integer
C1285588 (UMLS CUI [1])
Code List
Indicate the description that reflects the participants/subjects current rate of falls
CL Item
Normal (1)
CL Item
Rare falling (less than once a month) (2)
CL Item
Occasional falls (once a week to once a month) (3)
CL Item
Falls multiple times a week or requires device to prevent falls (4)
CL Item
Unable to stand (5)
Item
Indicate the description that reflects the participants/subjects current ability to walk
integer
C0559964 (UMLS CUI [1])
Code List
Indicate the description that reflects the participants/subjects current ability to walk
CL Item
Normal (1)
CL Item
Mild difficulty, perception of imbalance (2)
CL Item
Moderate difficulty, but requires little or no assistance (3)
CL Item
Severe disturbance of walking, requires assistance or walking aids (4)
CL Item
Cannot walk at all even with assistance (wheelchair bound) (5)
Item
Indicate the description that reflects the participants/subjects current ability to sit
integer
C0560879 (UMLS CUI [1])
Code List
Indicate the description that reflects the participants/subjects current ability to sit
CL Item
Normal (1)
CL Item
Slight imbalance of the trunk, but needs no back support (2)
CL Item
Unable to sit without back support (3)
CL Item
Can sit only with extensive support (geriatric chair, posy, etc.) (4)
CL Item
Unable to sit (5)
Item
Indicate the description that reflects the participants/subjects current level of bladder control
integer
C0542565 (UMLS CUI [1])
Code List
Indicate the description that reflects the participants/subjects current level of bladder control
CL Item
Normal (1)
CL Item
Mild urinary hesitance, urgency or retention (less than once a month) (2)
CL Item
Moderate hesitance,urgency,rate retention/incontinence (greater than once a month, but less than once a week) (3)
CL Item
Frequent urinary incontinence (greater than once a week) (4)
CL Item
Loss of bladder function requiring intermittent catheterization/ indwelling catheter (5)
Item
Indicate the description that reflects the participants/subjects current level of difficulty walking
integer
C0311394 (UMLS CUI [1])
Code List
Indicate the description that reflects the participants/subjects current level of difficulty walking
CL Item
Without any difficulty (Stop here) (1)
CL Item
With some difficulties walking or getting around (Skip to question 12) (2)
CL Item
With difficulty, difficulty walking interfered with activities of daily living (Skip to question 12) (3)
CL Item
Unable to walk on their own (4)
Unable to walk
Item
If participant/ subject is unable to walk on their own, indicate reason why
text
C0560046 (UMLS CUI [1])
Difficulty walking
Item
If participant/subject walks with some difficulties or with difficulty, indicate age when participant first noticed problems with walking
integer
C0311394 (UMLS CUI [1])
Difficulty walking
Item
Age of participant when he/she first noticed problems with walking is unknown
boolean
C0311394 (UMLS CUI [1])
Difficulty walking
Item
If participant /subject walks with some difficulties or with difficulty, indicate age when other people noticed gait disturbances
integer
C0311394 (UMLS CUI [1])
Difficulty walking
Item
Age of participant when others first noticed gait disturbances is unknown
boolean
C0311394 (UMLS CUI [1])
Walking support
Item
If participant/subject needs intermittent support for walking, indicate age of participant when support was first needed
integer
C0080331 (UMLS CUI [1,1])
C1521721 (UMLS CUI [1,2])
C1521721 (UMLS CUI [1,2])
Walking support
Item
Age of participant when intermittent walking support was first needed, is unknown
boolean
C0080331 (UMLS CUI [1,1])
C1521721 (UMLS CUI [1,2])
C1521721 (UMLS CUI [1,2])
Walking support
Item
If participant/subject needs permanent support for walking, indicate age of participant when support was first needed
integer
C0080331 (UMLS CUI [1,1])
C1521721 (UMLS CUI [1,2])
C1521721 (UMLS CUI [1,2])
Walking support
Item
Age of participant when permanent walking support was first needed,is unknown
boolean
C0080331 (UMLS CUI [1,1])
C1521721 (UMLS CUI [1,2])
C1521721 (UMLS CUI [1,2])
Wheelchair bound
Item
If participant/subject is permanently bound to the wheelchair, indicate age of participant when first permanently bound to wheelchair
integer
C0558195 (UMLS CUI [1])
Wheelchair bound
Item
Age of participant when first bound to wheelchair is unknown
boolean
C0558195 (UMLS CUI [1])
Item
Indicate if the participant/subject uses an assistive device.
integer
C3874140 (UMLS CUI [1])
CL Item
Yes (1)
CL Item
No (Stop here) (2)
CL Item
Unknown (Stop here) (3)
Item
Indicate if the participant/subject uses a cane
integer
C3874140 (UMLS CUI [1])
CL Item
Yes (1)
CL Item
No (Skip to next device) (2)
CL Item
Unknown (Skip to next device) (3)
Walking assistive device:cane
Item
If yes to cane, indicate age participant/subjectbegan using a cane
integer
C3874140 (UMLS CUI [1,1])
C0001779 (UMLS CUI [1,2])
C0001779 (UMLS CUI [1,2])
Walking assistive device:cane
Item
Age when participant began using a cane is unknown
boolean
C3874140 (UMLS CUI [1,1])
C0001779 (UMLS CUI [1,2])
C0001779 (UMLS CUI [1,2])
Item
Indicate if the participant/subjectuses two canes/ crutches
integer
C3874140 (UMLS CUI [1])
CL Item
Yes (1)
CL Item
No (Skip to next device) (2)
CL Item
Unknown (Skip to next device) (3)
Walking assistive device:two canes/crutches
Item
If yes to canes/ crutches, indicate age participant/subjectbegan using two canes/ crutches
integer
C3874140 (UMLS CUI [1,1])
C0001779 (UMLS CUI [1,2])
C0001779 (UMLS CUI [1,2])
Walking assistive device: two canes/crutches
Item
Age when participant began first using two canes/crutches is unknown
boolean
C3874140 (UMLS CUI [1,1])
C0001779 (UMLS CUI [1,2])
C0001779 (UMLS CUI [1,2])
Item
Indicate if participant/subject uses a walker
integer
C3874140 (UMLS CUI [1])
CL Item
Yes (1)
CL Item
No (Skip to next device) (2)
CL Item
Unknown (Skip to next device) (3)
Walking assistive device: walker
Item
If yes to using a walker, indicate age participant/subject began using a walker
integer
C3874140 (UMLS CUI [1,1])
C0001779 (UMLS CUI [1,2])
C0001779 (UMLS CUI [1,2])
Walking assistive device: walker
Item
Age when participant began first using a walker is unknown
boolean
C3874140 (UMLS CUI [1,1])
C0001779 (UMLS CUI [1,2])
C0001779 (UMLS CUI [1,2])
Item
Indicate if participant/subject uses canine assistance
integer
C0012984 (UMLS CUI [1,1])
C1521721 (UMLS CUI [1,2])
C1521721 (UMLS CUI [1,2])
CL Item
Yes (1)
CL Item
No (Skip to next device) (2)
CL Item
Unknown (Skip to next device) (3)
Canine assistance
Item
If yes to canine assistance, indicate age participant/subject began using canine assistance
integer
C0012984 (UMLS CUI [1,1])
C1521721 (UMLS CUI [1,2])
C0001779 (UMLS CUI [1,3])
C1521721 (UMLS CUI [1,2])
C0001779 (UMLS CUI [1,3])
Canine assistance
Item
Age when participant began first using canine assistance is unknown
boolean
C0012984 (UMLS CUI [1,1])
C1521721 (UMLS CUI [1,2])
C0001779 (UMLS CUI [1,3])
C1521721 (UMLS CUI [1,2])
C0001779 (UMLS CUI [1,3])
Item
Indicate if the participant/subject uses a wheelchair
integer
C0043143 (UMLS CUI [1])
CL Item
Yes (1)
CL Item
No (Skip to next device) (2)
CL Item
Unknown (Skip to next device) (3)
Wheelchair
Item
If yes to wheelchair, indicate age when the participant/subject began using a wheelchair
integer
C0043143 (UMLS CUI [1,1])
C0001779 (UMLS CUI [1,2])
C0001779 (UMLS CUI [1,2])
Wheelchair
Item
Age when participant began first using a wheelchair is unknown
boolean
C0043143 (UMLS CUI [1,1])
C0001779 (UMLS CUI [1,2])
C0001779 (UMLS CUI [1,2])
Item
Indicate if the participant/subjectuses any other assistive device
integer
C3874140 (UMLS CUI [1])
Code List
Indicate if the participant/subjectuses any other assistive device
CL Item
Yes (1)
CL Item
No (Skip to last question) (2)
CL Item
Unknown (Skip to last question) (3)
Walking assistive device:other
Item
If yes to other assistive device, indicate age participant/subject began using other assistive device
integer
C3874140 (UMLS CUI [1,1])
C0001779 (UMLS CUI [1,2])
C0001779 (UMLS CUI [1,2])
Walking assistive device:other
Item
Age when participant began first using other assistive device is unknown
boolean
C3874140 (UMLS CUI [1,1])
C0001779 (UMLS CUI [1,2])
C0001779 (UMLS CUI [1,2])
Time using the primary walking assistive device
Item
Indicate the amount of time the participant/subject uses the primary assistive walking device if applicable
time
C3874140 (UMLS CUI [1,1])
C0332168 (UMLS CUI [1,2])
C0332168 (UMLS CUI [1,2])
Time using primary walking assistive device
Item
Indication of time the participant/subject is using primary walking assistive device is not applicable
boolean
C3874140 (UMLS CUI [1,1])
C0332168 (UMLS CUI [1,2])
C0332168 (UMLS CUI [1,2])