ID

14785

Description

NINDS Common Data Elements (Participant/Subject Characteristics 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)
  1. 4/28/16 4/28/16 -
Uploaded on

April 28, 2016

DOI

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License

Creative Commons BY-NC 3.0
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NINDS CDE Participant/Subject Characteristics Friedreich's Ataxia

English

Demographics and Social Status

1 forms  
Demographics
Description

Demographics

Study ID
Description

Study ID

Data type

text

Alias
UMLS CUI [1]
C2826693
Study site name
Description

Study site

Data type

text

Alias
UMLS CUI [1]
C2825164
Subject ID
Description

Subject ID

Data type

text

Alias
UMLS CUI [1]
C2348585
Date of birth
Description

Date of birth

Data type

date

Alias
UMLS CUI [1]
C0421451
Gender
Description

Gender Type

Data type

integer

Alias
UMLS CUI [1]
C0079399
Ethnicity
Description

(“X” ONLY one with which you MOST CLOSELY identify):

Data type

integer

Alias
UMLS CUI [1]
C0015031
Race
Description

Race

Data type

integer

Alias
UMLS CUI [1]
C0034510
Years of education
Description

Years of education

Data type

integer

Measurement units
  • years
Alias
UMLS CUI [1]
C0013658
years
Snomed CT code
Description

Snomed CT code

Data type

text

Alias
UMLS CUI [1]
C3645701
Medical History Term
Description

Medical History Reported Term

Data type

text

Alias
UMLS CUI [1]
C2826728
Primary Language
Description

Primary Language

Data type

integer

Alias
UMLS CUI [1]
C0424919
Primary Language:if other please specify
Description

Primary Language

Data type

text

Alias
UMLS CUI [1]
C0424919
Country of Residence
Description

Country of Residence

Data type

integer

Alias
UMLS CUI [1]
C1562954
Country of Residence: if other, please specify
Description

Country of Residence

Data type

text

Alias
UMLS CUI [1]
C1562954
ZIP Code (First three digits only)
Description

ZIP Code

Data type

integer

Alias
UMLS CUI [1]
C1521842
Social Status
Description

Social Status

Employment status
Description

Employment Status

Data type

integer

Alias
UMLS CUI [1]
C0242271
If working now, do you work 35 hours or more per week?
Description

Working hours

Data type

integer

Alias
UMLS CUI [1]
C2135639
Highest education level attained
Description

Education level

Data type

integer

Alias
UMLS CUI [1]
C0013658
Marital status
Description

Marital status

Data type

integer

Alias
UMLS CUI [1]
C0024819
Number of people the participant/subject lives or stays with
Description

Size of household

Data type

integer

Alias
UMLS CUI [1]
C0682277
Persons living with the participant (choose all that apply)
Description

Size of household

Data type

integer

Alias
UMLS CUI [1]
C0682277
How many hours in a typical 24-hour day do you have someone with you (paid assistance) to provide physical assistance for personal care activities such as eating, bathing, dressing, toileting and mobility (hours paid assistance):
Description

Paid assistance

Data type

integer

Measurement units
  • hrs/24h
Alias
UMLS CUI [1]
C3845219
hrs/24h
How many hours in a typical 24-hour day do you have someone with you (unpaid assistance) to provide physical assistance for personal care activities such as eating, bathing, dressing, toileting and mobility(hours unpaid assistance family, others):
Description

Unpaid assistance

Data type

integer

Measurement units
  • hrs/24h
Alias
UMLS CUI [1]
C3845218
hrs/24h
How much time is someone with you in your home to assist you with activities that require remembering, decision making, or judgment?
Description

Assistance

Data type

integer

Alias
UMLS CUI [1]
C1521721
Family size (including yourself, number of people supported by family income):
Description

Family size

Data type

integer

Alias
UMLS CUI [1]
C0015611
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Similar models

Demographics and Social Status

1 forms
Name
Type
Description | Question | Decode (Coded Value)
Data type
Alias
Item Group
Demographics
Study ID
Item
Study ID
text
C2826693 (UMLS CUI [1])
Study site
Item
Study site name
text
C2825164 (UMLS CUI [1])
Subject ID
Item
Subject ID
text
C2348585 (UMLS CUI [1])
Date of birth
Item
Date of birth
date
C0421451 (UMLS CUI [1])
Item
Gender
integer
C0079399 (UMLS CUI [1])
Gender Type
Code List
Gender
CL Item
Female (1)
CL Item
Male (2)
CL Item
Unknown (3)
CL Item
Unspecified (4)
CL Item
Not reported (5)
Item
Ethnicity
integer
C0015031 (UMLS CUI [1])
Ethnicity
Code List
Ethnicity
CL Item
Hispanic or Latino (1)
CL Item
not Hispanic or Latino (2)
CL Item
Not Reported (3)
CL Item
Unknown (4)
Item
Race
integer
C0034510 (UMLS CUI [1])
Race
Code List
Race
CL Item
American Indian or Alaskan Native (1)
CL Item
Asian (2)
CL Item
Black or African American (3)
CL Item
Native Hawaiian or Other Pacific Islander (4)
CL Item
Unknown (5)
CL Item
White (6)
CL Item
Not reported (7)
Years of education
Item
Years of education
integer
C0013658 (UMLS CUI [1])
Snomed CT code
Item
Snomed CT code
text
C3645701 (UMLS CUI [1])
Medical History Reported Term
Item
Medical History Term
text
C2826728 (UMLS CUI [1])
Item
Primary Language
integer
C0424919 (UMLS CUI [1])
Primary Language
Code List
Primary Language
CL Item
English (eng)  (1)
CL Item
Spanish (spa) (2)
CL Item
German (ger) (3)
CL Item
Chinese (chi)  (4)
CL Item
French/Creole (cpf) (5)
CL Item
Arabic (ara) (6)
CL Item
Russian (rus) (7)
CL Item
Italian (ita) (8)
CL Item
Polish (pol) (9)
CL Item
Other, specify: (10)
Primary Language
Item
Primary Language:if other please specify
text
C0424919 (UMLS CUI [1])
Item
Country of Residence
integer
C1562954 (UMLS CUI [1])
Country of Residence
Code List
Country of Residence
CL Item
USA (US) (1)
CL Item
Canada (CA)  (2)
CL Item
United Kingdom (GB)  (3)
CL Item
Mexico (MX) (4)
CL Item
Australia (AU) (5)
CL Item
Other, specify (6)
Country of Residence
Item
Country of Residence: if other, please specify
text
C1562954 (UMLS CUI [1])
ZIP Code
Item
ZIP Code (First three digits only)
integer
C1521842 (UMLS CUI [1])
Item Group
Social Status
Item
Employment status
integer
C0242271 (UMLS CUI [1])
Employment Status
Code List
Employment status
CL Item
Working now (Answer 6b below) (1)
CL Item
Student (2)
CL Item
Looking for work, unemployed (3)
CL Item
Only temporarily laid off (4)
CL Item
Sick leave or maternity leave (5)
CL Item
Retired (6)
CL Item
Disabled, permanently or temporarily (7)
CL Item
Keeping house (Regardless of marital status)  (8)
CL Item
Other, specify: (9)
CL Item
Unknown (10)
Item
If working now, do you work 35 hours or more per week?
integer
C2135639 (UMLS CUI [1])
Working hours
Code List
If working now, do you work 35 hours or more per week?
CL Item
Yes  (1)
CL Item
No (2)
CL Item
Hours vary (3)
CL Item
Unknown (4)
CL Item
Not reported (5)
Item
Highest education level attained
integer
C0013658 (UMLS CUI [1])
Education level
Code List
Highest education level attained
CL Item
Never attended/ Kindergarten only (1)
CL Item
1st Grade (2)
CL Item
2nd Grade (3)
CL Item
3rd Grade (4)
CL Item
4th Grade (5)
CL Item
5th Grade (6)
CL Item
6th Grade (7)
CL Item
7th Grade (8)
CL Item
8th Grade (9)
CL Item
9th Grade (10)
CL Item
10th Grade (11)
CL Item
11th Grade (12)
CL Item
12th Grade, no diploma (13)
CL Item
High school graduate (14)
CL Item
GED or equivalent (15)
CL Item
Some college, no degree  (16)
CL Item
Associate degree: occupational, technical, or vocational program (17)
CL Item
Associate degree: academic program (18)
CL Item
Bachelor´s degree (e.g., BA, AB, BS, BBA) (19)
CL Item
Master´s degree (e.g., MA, MS, MEng, MEd, MBA) (20)
CL Item
Professional school degree (e.g., MD, DDS, DVM, JD) (21)
CL Item
Doctoral degree (e.g., PhD, EdD) (22)
CL Item
Unknown (23)
Item
Marital status
integer
C0024819 (UMLS CUI [1])
Marital status
Code List
Marital status
CL Item
Never Married (1)
CL Item
Married (2)
CL Item
Domestic Partnership (3)
CL Item
Separated  (4)
CL Item
Divorced (5)
CL Item
Widowed (6)
Size of household
Item
Number of people the participant/subject lives or stays with
integer
C0682277 (UMLS CUI [1])
Item
Persons living with the participant (choose all that apply)
integer
C0682277 (UMLS CUI [1])
Size of household
Code List
Persons living with the participant (choose all that apply)
CL Item
Husband or wife (1)
CL Item
Biological son or daughter (2)
CL Item
Adopted son or daughter (3)
CL Item
Stepson or stepdaughter (4)
CL Item
Brother or sister (5)
CL Item
Father or mother (6)
CL Item
Stepfather or stepmother (7)
CL Item
Grandchild (8)
CL Item
Grandparent  (9)
CL Item
Parent-in-law (10)
CL Item
Son-in-law or daughter-in-law (11)
CL Item
Other relative (12)
CL Item
Roomer or boarder (13)
CL Item
Housemate or roommate (14)
CL Item
Unmarried partner (15)
CL Item
Foster child (16)
CL Item
Other patient/ resident in care facility (17)
CL Item
Personal care attendant (18)
CL Item
Military unit member (19)
CL Item
Other nonrelative (20)
CL Item
N/A – Homeless (21)
CL Item
N/A – Alone (22)
CL Item
Unknown (23)
Paid assistance
Item
How many hours in a typical 24-hour day do you have someone with you (paid assistance) to provide physical assistance for personal care activities such as eating, bathing, dressing, toileting and mobility (hours paid assistance):
integer
C3845219 (UMLS CUI [1])
Unpaid assistance
Item
How many hours in a typical 24-hour day do you have someone with you (unpaid assistance) to provide physical assistance for personal care activities such as eating, bathing, dressing, toileting and mobility(hours unpaid assistance family, others):
integer
C3845218 (UMLS CUI [1])
Item
How much time is someone with you in your home to assist you with activities that require remembering, decision making, or judgment?
integer
C1521721 (UMLS CUI [1])
Assistance
Code List
How much time is someone with you in your home to assist you with activities that require remembering, decision making, or judgment?
CL Item
Someone is always with me to observe or supervise. (1)
CL Item
Someone is always around, but they only check on me now and then. (2)
CL Item
Sometimes I am left alone for an hour or two. (3)
CL Item
Sometimes I am left alone for most of the day. (4)
CL Item
I have been left alone all day and all night, but someone checks in on me. (5)
CL Item
I am left alone without anyone checking on me. (6)
Family size
Item
Family size (including yourself, number of people supported by family income):
integer
C0015611 (UMLS CUI [1])
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