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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.
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https://www.commondataelements.ninds.nih.gov/
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- 28/04/2016 28/04/2016 -
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28 avril 2016
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NINDS CDE Participant/Subject Characteristics Friedreich's Ataxia
Demographics and Social Status
- StudyEvent: ODM
Similar models
Demographics and Social Status
- StudyEvent: ODM
Name
Type
Description | Question | Decode (Coded Value)
Type de données
Alias
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])
CL Item
Female (1)
CL Item
Male (2)
CL Item
Unknown (3)
CL Item
Unspecified (4)
CL Item
Not reported (5)
CL Item
Hispanic or Latino (1)
CL Item
not Hispanic or Latino (2)
CL Item
Not Reported (3)
CL Item
Unknown (4)
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])
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])
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])
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])
CL Item
Yes (1)
CL Item
No (2)
CL Item
Hours vary (3)
CL Item
Unknown (4)
CL Item
Not reported (5)
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)
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])
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])
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])