ID

12782

Description

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/

Keywords

Versions (1)
  1. 12/21/15 12/21/15 -
Uploaded on

December 21, 2015

DOI

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License

Creative Commons BY-NC 3.0
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NINDS CDE Family History Amyotrophic Lateral Sclerosis

English

General Health History

1 forms  
  1. StudyEvent: ODM
    1. General Health History
Family History
Description

Family History

Are you adopted?
Description

Adoption

Data type

boolean

Alias
UMLS CUI [1]
C0237459
Are your parents, cousins, or otherwise biologically related to each other?
Description

Biological relation

Data type

boolean

Alias
UMLS CUI [1]
C0682317
Has anyone in your family ever been diagnosed with Amyotrophic Lateral Sclerosis (ALS) or Frontotemporal Dementia (FTD)?
Description

If Yes, attach pedigree and complete the table

Data type

boolean

Alias
UMLS CUI [1]
C0241889
UMLS CUI [2]
C0002736
UMLS CUI [3]
C0338451
Has your mother been diagnosed with ALS/FTD/other neurological diseases?
Description

Medical History of mother

Data type

text

Alias
UMLS CUI [1]
C0241889
UMLS CUI [2]
C0026591
Are there tissue samples of your mother in repository?
Description

Tissue samples of mother

Data type

text

Alias
UMLS CUI [1]
C0026591
UMLS CUI [2]
C1292533
Has your father been diagnosed with ALS/FTD/other neurological diseases?
Description

Medical History of father

Data type

text

Alias
UMLS CUI [1]
C0015671
UMLS CUI [2]
C0241889
Are there tissue samples of your father in repository?
Description

Tissue samples of father

Data type

text

Alias
UMLS CUI [1]
C1292533
UMLS CUI [2]
C0015671
How many siblings does the patient have?
Description

Number of siblings

Data type

integer

Alias
UMLS CUI [1]
C0557094
Has one of your siblings been diagnosed with ALS/FTD/other neurological diseases?
Description

Medical History Siblings

Data type

text

Alias
UMLS CUI [1]
C0037047
UMLS CUI [2]
C0241889
Are there tissue samples of your sibling in repository?
Description

Tissue sample of sibling

Data type

text

Alias
UMLS CUI [1]
C1292533
UMLS CUI [2]
C0037047
How many half siblings does the patient have?
Description

Number of half siblings

Data type

integer

Alias
UMLS CUI [1]
C0337505
Has one of your half siblings been diagnosed with ALS/FTD/other neurological diseases?
Description

Medical history of half siblings

Data type

text

Alias
UMLS CUI [1]
C0337505
UMLS CUI [2]
C0241889
Are there tissue samples of your half sibling in repository?
Description

Tissue sample of half sibling

Data type

text

Alias
UMLS CUI [1]
C1292533
UMLS CUI [2]
C0337505
Has your maternal grandmother been diagnosed with ALS/FTD/other neurological diseases?
Description

Medical history of maternal grandmother

Data type

text

Alias
UMLS CUI [1]
C1273525
UMLS CUI [2]
C0241889
Are there tissue samples of your maternal grandmother in repository?
Description

Tissue sample of maternal grandmother

Data type

text

Alias
UMLS CUI [1]
C1292533
UMLS CUI [2]
C1273525
Has your maternal grandfather been diagnosed with ALS/FTD/other neurological diseases?
Description

Medical history of maternal grandfather

Data type

text

Alias
UMLS CUI [1]
C1273523
UMLS CUI [2]
C0241889
Are there tissue samples of your maternal grandfather in repository?
Description

Tissue sample of maternal grandfather

Data type

text

Alias
UMLS CUI [1]
C1292533
UMLS CUI [2]
C1273523
Has your paternal grandmother been diagnosed with ALS/FTD/other neurological diseases?
Description

Medical history of paternal grandmother

Data type

text

Alias
UMLS CUI [1]
C0241889
UMLS CUI [2]
C1273524
Are there tissue samples of your paternal grandmother in repository?
Description

Tissue sample of paternal grandmother

Data type

text

Alias
UMLS CUI [1]
C1292533
UMLS CUI [2]
C1273524
Has your paternal grandfather been diagnosed with ALS/FTD/other neurological diseases?
Description

Medical history of paternal grandfather

Data type

text

Alias
UMLS CUI [1]
C1273522
UMLS CUI [2]
C0241889
Are there tissue samples of your paternal grandfather in repository?
Description

Tissue sample of paternal grandfather

Data type

text

Alias
UMLS CUI [1]
C1273522
UMLS CUI [2]
C1292533
How many maternal aunts does the patient have?
Description

Number of maternal aunts

Data type

integer

Alias
UMLS CUI [1]
C3714275
UMLS CUI [2]
C0750480
Has your maternal aunt been diagnosed with ALS/FTD/other neurological diseases?
Description

Medical history of maternal aunt

Data type

text

Alias
UMLS CUI [1]
C3714275
UMLS CUI [2]
C0241889
Are there tissue samples of your maternal aunt in repository?
Description

Tissue sample of maternal aunt

Data type

text

Alias
UMLS CUI [1]
C1292533
UMLS CUI [2]
C3714275
How many maternal uncles does the patient habe?
Description

Number of maternal uncles

Data type

integer

Alias
UMLS CUI [1]
C3714277
UMLS CUI [2]
C0750480
Has your maternal uncle been diagnosed with ALS/FTD/other neurological diseases?
Description

Medical history of maternal uncle

Data type

text

Alias
UMLS CUI [1]
C0241889
UMLS CUI [2]
C3714277
Are there tissue samples of your maternal uncle in repository?
Description

Tissue sample of maternal uncle

Data type

text

Alias
UMLS CUI [1]
C3714277
UMLS CUI [2]
C1292533
How many paternal aunts does the patient have?
Description

Number of paternal aunts

Data type

integer

Alias
UMLS CUI [1]
C3714274
UMLS CUI [2]
C0750480
Has your paternal aunt been diagnosed with ALS/FTD/other neurological diseases?
Description

Medical History of paternal aunt

Data type

text

Alias
UMLS CUI [1]
C3714274
UMLS CUI [2]
C0241889
Are there tissue samples of your paternal aunt in repository?
Description

Tissue sample of paternal aunt

Data type

text

Alias
UMLS CUI [1]
C1292533
UMLS CUI [2]
C3714274
How many paternal uncles does the patient have?
Description

Number of paternal uncles

Data type

integer

Alias
UMLS CUI [1]
C3714276
UMLS CUI [2]
C0750480
Has your paternal uncle been diagnosed with ALS/FTD/other neurologfical diseases?
Description

Medical history of paternal uncle

Data type

text

Alias
UMLS CUI [1]
C3714276
UMLS CUI [2]
C0241889
Are there tissue samples of your paternal uncle in repository?
Description

Tissue sample of paternal uncle

Data type

text

Alias
UMLS CUI [1]
C3714276
UMLS CUI [2]
C1292533
How many maternal cousins does the patient have?
Description

Number of maternal cousins

Data type

integer

Alias
UMLS CUI [1]
C3844805
UMLS CUI [2]
C0750480
Has your maternal cousin been diagnosed with ALS/FTD/other neurological diseases?
Description

Medical history of maternal cousin

Data type

text

Alias
UMLS CUI [1]
C0241889
UMLS CUI [2]
C3844805
Are there tissue samples of your maternal cousin in repository?
Description

Tissue sample of maternal cousin

Data type

text

Alias
UMLS CUI [1]
C3844805
UMLS CUI [2]
C1292533
How many paternal cousins does the patient have?
Description

Number of paternal cousins

Data type

integer

Alias
UMLS CUI [1]
C3844804
UMLS CUI [2]
C0750480
Has your paternal cousin been diagnosed with ALS/FTD/other neurological diseases?
Description

Medical history of paternal cousin

Data type

text

Alias
UMLS CUI [1]
C3844804
UMLS CUI [2]
C0241889
Are there tissue samples of your paternal cousin in repository?
Description

Tissue sample of paternal cousin

Data type

text

Alias
UMLS CUI [1]
C3844804
UMLS CUI [2]
C1292533
Other relative, please specify
Description

Other relative

Data type

text

Alias
UMLS CUI [1]
C3174795
Has your relative been diagnosed with ALS/FTD/other neurological diseases?
Description

Medical history of other relative

Data type

text

Alias
UMLS CUI [1]
C3174795
UMLS CUI [2]
C0241889
Are there tissue samples of your relative in repository?
Description

Tissue sample of other relative

Data type

text

Alias
UMLS CUI [1]
C1292533
UMLS CUI [2]
C3174795
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Similar models

General Health History

1 forms
  1. StudyEvent: ODM
    1. General Health History
Name
Type
Description | Question | Decode (Coded Value)
Data type
Alias
Item Group
Family History
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])
Item
Has your mother been diagnosed with ALS/FTD/other neurological diseases?
text
C0241889 (UMLS CUI [1])
C0026591 (UMLS CUI [2])
Medical History of mother
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])
Tissue samples of mother
Code List
Are there tissue samples of your mother in repository?
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])
Medical History of father
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])
Tissue samples of father
Code List
Are there tissue samples of your father in repository?
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])
Medical History Siblings
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])
Tissue sample of sibling
Code List
Are there tissue samples of your sibling in repository?
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])
Medical history of half siblings
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])
Tissue sample of half sibling
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])
Medical history of maternal grandmother
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])
Tissue sample of maternal grandmother
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])
Medical history of maternal grandfather
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])
Tissue sample of maternal grandfather
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])
Medical history of paternal grandmother
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])
Tissue sample of paternal grandmother
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])
Medical history of paternal grandfather
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])
Tissue sample of paternal grandfather
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])
Item
Has your maternal aunt been diagnosed with ALS/FTD/other neurological diseases?
text
C3714275 (UMLS CUI [1])
C0241889 (UMLS CUI [2])
Medical history of maternal aunt
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])
Tissue sample of maternal aunt
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])
Item
Has your maternal uncle been diagnosed with ALS/FTD/other neurological diseases?
text
C0241889 (UMLS CUI [1])
C3714277 (UMLS CUI [2])
Medical history of maternal uncle
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])
Tissue sample of maternal uncle
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])
Item
Has your paternal aunt been diagnosed with ALS/FTD/other neurological diseases?
text
C3714274 (UMLS CUI [1])
C0241889 (UMLS CUI [2])
Medical History of paternal aunt
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])
Tissue sample of paternal aunt
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])
Item
Has your paternal uncle been diagnosed with ALS/FTD/other neurologfical diseases?
text
C3714276 (UMLS CUI [1])
C0241889 (UMLS CUI [2])
Medical history of paternal uncle
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])
Tissue sample of paternal uncle
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])
Item
Has your maternal cousin been diagnosed with ALS/FTD/other neurological diseases?
text
C0241889 (UMLS CUI [1])
C3844805 (UMLS CUI [2])
Medical history of maternal cousin
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])
Tissue sample of maternal cousin
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])
Item
Has your paternal cousin been diagnosed with ALS/FTD/other neurological diseases?
text
C3844804 (UMLS CUI [1])
C0241889 (UMLS CUI [2])
Medical history of paternal cousin
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])
Tissue sample of paternal cousin
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])
Medical history of other relative
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])
Tissue sample of other relative
Code List
Are there tissue samples of your relative in repository?
CL Item
Yes (please give specimen ID) (1)
CL Item
No (2)
CL Item
Unknown (3)
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