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ID
12782
Beschrijving
NINDS Common Data Elements [Participant/Subject History and Family History] [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/
Trefwoorden
Versies (1)
- 21-12-15 21-12-15 -
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21 december 2015
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Creative Commons BY-NC 3.0
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NINDS CDE Family History Amyotrophic Lateral Sclerosis
General Health History
- StudyEvent: ODM
Similar models
General Health History
- StudyEvent: ODM
Name
Type
Description | Question | Decode (Coded Value)
Datatype
Alias
Adoption
Item
Are you adopted?
boolean
C0237459 (UMLS CUI [1])
Biological relation
Item
Are your parents, cousins, or otherwise biologically related to each other?
boolean
C0682317 (UMLS CUI [1])
Family history of ALS or FTD
Item
Has anyone in your family ever been diagnosed with Amyotrophic Lateral Sclerosis (ALS) or Frontotemporal Dementia (FTD)?
boolean
C0241889 (UMLS CUI [1])
C0002736 (UMLS CUI [2])
C0338451 (UMLS CUI [3])
C0002736 (UMLS CUI [2])
C0338451 (UMLS CUI [3])
Item
Has your mother been diagnosed with ALS/FTD/other neurological diseases?
text
C0241889 (UMLS CUI [1])
C0026591 (UMLS CUI [2])
C0026591 (UMLS CUI [2])
Code List
Has your mother been diagnosed with ALS/FTD/other neurological diseases?
CL Item
ALS (1)
CL Item
FTD (2)
CL Item
other neurological disease (please specify) (3)
CL Item
None (4)
Item
Are there tissue samples of your mother in repository?
text
C0026591 (UMLS CUI [1])
C1292533 (UMLS CUI [2])
C1292533 (UMLS CUI [2])
CL Item
Yes (please give specimen ID) (1)
CL Item
No (2)
CL Item
Unknown (3)
Item
Has your father been diagnosed with ALS/FTD/other neurological diseases?
text
C0015671 (UMLS CUI [1])
C0241889 (UMLS CUI [2])
C0241889 (UMLS CUI [2])
Code List
Has your father been diagnosed with ALS/FTD/other neurological diseases?
CL Item
ALS (1)
CL Item
FTD (2)
CL Item
other neurological diseases (please specify) (3)
CL Item
None (4)
Item
Are there tissue samples of your father in repository?
text
C1292533 (UMLS CUI [1])
C0015671 (UMLS CUI [2])
C0015671 (UMLS CUI [2])
CL Item
Yes (please give specimen ID) (1)
CL Item
No (2)
CL Item
Unknown (3)
Number of siblings
Item
How many siblings does the patient have?
integer
C0557094 (UMLS CUI [1])
Item
Has one of your siblings been diagnosed with ALS/FTD/other neurological diseases?
text
C0037047 (UMLS CUI [1])
C0241889 (UMLS CUI [2])
C0241889 (UMLS CUI [2])
Code List
Has one of your siblings been diagnosed with ALS/FTD/other neurological diseases?
CL Item
ALS (1)
CL Item
FTD (2)
CL Item
other neurological disease (please specify) (3)
CL Item
None (4)
Item
Are there tissue samples of your sibling in repository?
text
C1292533 (UMLS CUI [1])
C0037047 (UMLS CUI [2])
C0037047 (UMLS CUI [2])
CL Item
Yes (please give specimen ID) (1)
CL Item
No (2)
CL Item
Unknown (3)
Number of half siblings
Item
How many half siblings does the patient have?
integer
C0337505 (UMLS CUI [1])
Item
Has one of your half siblings been diagnosed with ALS/FTD/other neurological diseases?
text
C0337505 (UMLS CUI [1])
C0241889 (UMLS CUI [2])
C0241889 (UMLS CUI [2])
Code List
Has one of your half siblings been diagnosed with ALS/FTD/other neurological diseases?
CL Item
ALS (1)
CL Item
FTD (2)
CL Item
other neurological disease (please specify) (3)
CL Item
None (4)
Item
Are there tissue samples of your half sibling in repository?
text
C1292533 (UMLS CUI [1])
C0337505 (UMLS CUI [2])
C0337505 (UMLS CUI [2])
Code List
Are there tissue samples of your half sibling in repository?
CL Item
Yes (please give specimen ID) (1)
CL Item
No (2)
CL Item
Unknown (3)
Item
Has your maternal grandmother been diagnosed with ALS/FTD/other neurological diseases?
text
C1273525 (UMLS CUI [1])
C0241889 (UMLS CUI [2])
C0241889 (UMLS CUI [2])
Code List
Has your maternal grandmother been diagnosed with ALS/FTD/other neurological diseases?
CL Item
ALS (1)
CL Item
FTD (2)
CL Item
other neurological diseases (please specify) (3)
CL Item
None (4)
Item
Are there tissue samples of your maternal grandmother in repository?
text
C1292533 (UMLS CUI [1])
C1273525 (UMLS CUI [2])
C1273525 (UMLS CUI [2])
Code List
Are there tissue samples of your maternal grandmother in repository?
CL Item
Yes (please give specimen ID) (1)
CL Item
No (2)
CL Item
Unknown (3)
Item
Has your maternal grandfather been diagnosed with ALS/FTD/other neurological diseases?
text
C1273523 (UMLS CUI [1])
C0241889 (UMLS CUI [2])
C0241889 (UMLS CUI [2])
Code List
Has your maternal grandfather been diagnosed with ALS/FTD/other neurological diseases?
CL Item
ALS (1)
CL Item
FTD (2)
CL Item
other neurological diseases (please specify) (3)
CL Item
None (4)
Item
Are there tissue samples of your maternal grandfather in repository?
text
C1292533 (UMLS CUI [1])
C1273523 (UMLS CUI [2])
C1273523 (UMLS CUI [2])
Code List
Are there tissue samples of your maternal grandfather in repository?
CL Item
yes (please give specimen ID) (1)
CL Item
No (2)
CL Item
Unknown (3)
Item
Has your paternal grandmother been diagnosed with ALS/FTD/other neurological diseases?
text
C0241889 (UMLS CUI [1])
C1273524 (UMLS CUI [2])
C1273524 (UMLS CUI [2])
Code List
Has your paternal grandmother been diagnosed with ALS/FTD/other neurological diseases?
CL Item
ALS (1)
CL Item
FTD (2)
CL Item
other neurological diseases (please specify) (3)
CL Item
None (4)
Item
Are there tissue samples of your paternal grandmother in repository?
text
C1292533 (UMLS CUI [1])
C1273524 (UMLS CUI [2])
C1273524 (UMLS CUI [2])
Code List
Are there tissue samples of your paternal grandmother in repository?
CL Item
Yes (please give specimen ID) (1)
CL Item
No (2)
CL Item
Unknown (3)
Item
Has your paternal grandfather been diagnosed with ALS/FTD/other neurological diseases?
text
C1273522 (UMLS CUI [1])
C0241889 (UMLS CUI [2])
C0241889 (UMLS CUI [2])
Code List
Has your paternal grandfather been diagnosed with ALS/FTD/other neurological diseases?
CL Item
ALS (1)
CL Item
FTD (2)
CL Item
other neurological diseases (please specify) (3)
CL Item
None (4)
Item
Are there tissue samples of your paternal grandfather in repository?
text
C1273522 (UMLS CUI [1])
C1292533 (UMLS CUI [2])
C1292533 (UMLS CUI [2])
Code List
Are there tissue samples of your paternal grandfather in repository?
CL Item
yes (please give specimen ID) (1)
CL Item
No (2)
CL Item
Unknown (3)
Number of maternal aunts
Item
How many maternal aunts does the patient have?
integer
C3714275 (UMLS CUI [1])
C0750480 (UMLS CUI [2])
C0750480 (UMLS CUI [2])
Item
Has your maternal aunt been diagnosed with ALS/FTD/other neurological diseases?
text
C3714275 (UMLS CUI [1])
C0241889 (UMLS CUI [2])
C0241889 (UMLS CUI [2])
Code List
Has your maternal aunt been diagnosed with ALS/FTD/other neurological diseases?
CL Item
ALS (1)
CL Item
FTD (2)
CL Item
other neurological disease (please specify) (3)
CL Item
None (4)
Item
Are there tissue samples of your maternal aunt in repository?
text
C1292533 (UMLS CUI [1])
C3714275 (UMLS CUI [2])
C3714275 (UMLS CUI [2])
Code List
Are there tissue samples of your maternal aunt in repository?
CL Item
Yes (please give specimen ID) (1)
CL Item
No (2)
CL Item
Unknown (3)
Number of maternal uncles
Item
How many maternal uncles does the patient habe?
integer
C3714277 (UMLS CUI [1])
C0750480 (UMLS CUI [2])
C0750480 (UMLS CUI [2])
Item
Has your maternal uncle been diagnosed with ALS/FTD/other neurological diseases?
text
C0241889 (UMLS CUI [1])
C3714277 (UMLS CUI [2])
C3714277 (UMLS CUI [2])
Code List
Has your maternal uncle been diagnosed with ALS/FTD/other neurological diseases?
CL Item
ALS (1)
CL Item
FTD (2)
CL Item
other neurological diseases (please specify) (3)
CL Item
None (4)
Item
Are there tissue samples of your maternal uncle in repository?
text
C3714277 (UMLS CUI [1])
C1292533 (UMLS CUI [2])
C1292533 (UMLS CUI [2])
Code List
Are there tissue samples of your maternal uncle in repository?
CL Item
Yes (please give specimen ID) (1)
CL Item
No (2)
CL Item
Unknown (3)
Number of paternal aunts
Item
How many paternal aunts does the patient have?
integer
C3714274 (UMLS CUI [1])
C0750480 (UMLS CUI [2])
C0750480 (UMLS CUI [2])
Item
Has your paternal aunt been diagnosed with ALS/FTD/other neurological diseases?
text
C3714274 (UMLS CUI [1])
C0241889 (UMLS CUI [2])
C0241889 (UMLS CUI [2])
Code List
Has your paternal aunt been diagnosed with ALS/FTD/other neurological diseases?
CL Item
ALS (1)
CL Item
FTD (2)
CL Item
other neurological diseases (please specify) (3)
CL Item
None (4)
Item
Are there tissue samples of your paternal aunt in repository?
text
C1292533 (UMLS CUI [1])
C3714274 (UMLS CUI [2])
C3714274 (UMLS CUI [2])
Code List
Are there tissue samples of your paternal aunt in repository?
CL Item
Yes (please give specimen ID) (1)
CL Item
No (2)
CL Item
Unknown (3)
Number of paternal uncles
Item
How many paternal uncles does the patient have?
integer
C3714276 (UMLS CUI [1])
C0750480 (UMLS CUI [2])
C0750480 (UMLS CUI [2])
Item
Has your paternal uncle been diagnosed with ALS/FTD/other neurologfical diseases?
text
C3714276 (UMLS CUI [1])
C0241889 (UMLS CUI [2])
C0241889 (UMLS CUI [2])
Code List
Has your paternal uncle been diagnosed with ALS/FTD/other neurologfical diseases?
CL Item
ALS (1)
CL Item
FTD (2)
CL Item
other neurological diseases (please specify) (3)
CL Item
None (4)
Item
Are there tissue samples of your paternal uncle in repository?
text
C3714276 (UMLS CUI [1])
C1292533 (UMLS CUI [2])
C1292533 (UMLS CUI [2])
Code List
Are there tissue samples of your paternal uncle in repository?
CL Item
Yes (please give specimen ID) (1)
CL Item
No (2)
CL Item
Unknown (3)
Number of maternal cousins
Item
How many maternal cousins does the patient have?
integer
C3844805 (UMLS CUI [1])
C0750480 (UMLS CUI [2])
C0750480 (UMLS CUI [2])
Item
Has your maternal cousin been diagnosed with ALS/FTD/other neurological diseases?
text
C0241889 (UMLS CUI [1])
C3844805 (UMLS CUI [2])
C3844805 (UMLS CUI [2])
Code List
Has your maternal cousin been diagnosed with ALS/FTD/other neurological diseases?
CL Item
ALS (1)
CL Item
FTD (2)
CL Item
other neurological diseases (please specify) (3)
CL Item
None (4)
Item
Are there tissue samples of your maternal cousin in repository?
text
C3844805 (UMLS CUI [1])
C1292533 (UMLS CUI [2])
C1292533 (UMLS CUI [2])
Code List
Are there tissue samples of your maternal cousin in repository?
CL Item
Yes (please give specimen ID) (1)
CL Item
No (2)
CL Item
Unknown (3)
Number of paternal cousins
Item
How many paternal cousins does the patient have?
integer
C3844804 (UMLS CUI [1])
C0750480 (UMLS CUI [2])
C0750480 (UMLS CUI [2])
Item
Has your paternal cousin been diagnosed with ALS/FTD/other neurological diseases?
text
C3844804 (UMLS CUI [1])
C0241889 (UMLS CUI [2])
C0241889 (UMLS CUI [2])
Code List
Has your paternal cousin been diagnosed with ALS/FTD/other neurological diseases?
CL Item
ALS (1)
CL Item
FTD (2)
CL Item
other neurological diseases (please specify) (3)
CL Item
None (4)
Item
Are there tissue samples of your paternal cousin in repository?
text
C3844804 (UMLS CUI [1])
C1292533 (UMLS CUI [2])
C1292533 (UMLS CUI [2])
Code List
Are there tissue samples of your paternal cousin in repository?
CL Item
Yes (please give specimen ID) (1)
CL Item
No (2)
CL Item
Unknown (3)
Other relative
Item
Other relative, please specify
text
C3174795 (UMLS CUI [1])
Item
Has your relative been diagnosed with ALS/FTD/other neurological diseases?
text
C3174795 (UMLS CUI [1])
C0241889 (UMLS CUI [2])
C0241889 (UMLS CUI [2])
Code List
Has your relative been diagnosed with ALS/FTD/other neurological diseases?
CL Item
ALS (1)
CL Item
FTD (2)
CL Item
other neurological diseases (please specify) (3)
CL Item
None (4)
Item
Are there tissue samples of your relative in repository?
text
C1292533 (UMLS CUI [1])
C3174795 (UMLS CUI [2])
C3174795 (UMLS CUI [2])
CL Item
Yes (please give specimen ID) (1)
CL Item
No (2)
CL Item
Unknown (3)