ID

16033

Beschrijving

NINDS Common Data Elements, Multiple Sclerosis Family History - Affected Relatives and Pedigree 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

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  1. 26-06-16 26-06-16 -
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NINDS CDE Family History - Affected Relatives and Pedigree Multiple Sclerosis

Engels

Family History - Affected Relatives and Pedigree

1 Formulieren  
Biological Parents Data Table
Beschrijving

Biological Parents Data Table

Alias
UMLS CUI-1
C0337465
Date pedigree taken
Beschrijving

Date family history

Datatype

date

Alias
UMLS CUI [1,1]
C0011008
UMLS CUI [1,2]
C0241889
Is your biological mother a relative of your biological father?
Beschrijving

Biological parent

Datatype

text

Alias
UMLS CUI [1]
C0337465
If other, specify:
Beschrijving

Other

Datatype

text

Alias
UMLS CUI [1]
C0205394
Date of Birth (mother)
Beschrijving

Date of birth mother

Datatype

date

Alias
UMLS CUI [1,1]
C2599455
UMLS CUI [1,2]
C0026591
Diagnosis of MS (mother)?
Beschrijving

multiple sclerosis mother

Datatype

text

Alias
UMLS CUI [1,1]
C0026769
UMLS CUI [1,2]
C0026591
Age at Death of mother (if applicable)
Beschrijving

Age at Death mother

Datatype

integer

Alias
UMLS CUI [1,1]
C1546180
UMLS CUI [1,2]
C0026591
Cause of Death of mother (if applicable)
Beschrijving

Cause of Death mother

Datatype

text

Alias
UMLS CUI [1,1]
C0007465
UMLS CUI [1,2]
C0026591
Is this parent a twin?
Beschrijving

Twin

Datatype

text

Alias
UMLS CUI [1]
C0041427
Date of Birth (father)
Beschrijving

Date of birth father

Datatype

date

Alias
UMLS CUI [1,1]
C2599455
UMLS CUI [1,2]
C0015671
Diagnosis of MS (father)?
Beschrijving

multiple sclerosis father

Datatype

text

Alias
UMLS CUI [1,1]
C0026769
UMLS CUI [1,2]
C0015671
Age at Death of father (if applicable)
Beschrijving

Age at Death father

Datatype

integer

Alias
UMLS CUI [1,1]
C1546180
UMLS CUI [1,2]
C0015671
Cause of Death of father (if applicable)
Beschrijving

Cause of Death father

Datatype

text

Alias
UMLS CUI [1,1]
C0007465
UMLS CUI [1,2]
C0015671
Is this parent a twin?
Beschrijving

Twin

Datatype

text

Alias
UMLS CUI [1]
C0041427
Family history
Beschrijving

Family history

Alias
UMLS CUI-1
C0241889
Are you a twin?
Beschrijving

Twin

Datatype

text

Alias
UMLS CUI [1]
C0041427
Is your twin alive?
Beschrijving

twin alive

Datatype

boolean

Alias
UMLS CUI [1,1]
C2321281
UMLS CUI [1,2]
C2321291
If no, specify age at death:
Beschrijving

age at death

Datatype

integer

Alias
UMLS CUI [1]
C1546180
Are you adopted?
Beschrijving

Adoption

Datatype

text

Alias
UMLS CUI [1]
C0237459
If Yes, age at time of adoption
Beschrijving

age Adoption

Datatype

text

Alias
UMLS CUI [1,1]
C0001779
UMLS CUI [1,2]
C0001593
Do you have any adopted children who were adopted before age 1?
Beschrijving

age Adoption of child

Datatype

text

Alias
UMLS CUI [1,1]
C0001779
UMLS CUI [1,2]
C0237459
Do you have any adopted siblings who were adopted before age 1?
Beschrijving

age adopted siblings

Datatype

text

Alias
UMLS CUI [1,1]
C0001779
UMLS CUI [1,2]
C0237459
UMLS CUI [1,3]
C0037047
Have any of your siblings been diagnosed with MS?
Beschrijving

If Yes, complete a row for each sibling diagnosed with MS.

Datatype

text

Alias
UMLS CUI [1,1]
C0026769
UMLS CUI [1,2]
C0037047
Sibling Information Data Table
Beschrijving

Sibling Information Data Table

Alias
UMLS CUI-1
C1533716
UMLS CUI-2
C0037047
Date of Birth
Beschrijving

Include all live births, including those who died shortly after birth

Datatype

date

Alias
UMLS CUI [1]
C2599455
Gender
Beschrijving

Gender

Datatype

text

Alias
UMLS CUI [1]
C0079399
Full Sibling
Beschrijving

Full Sibling

Datatype

boolean

Alias
UMLS CUI [1]
C2348717
Maternal Half Sibling
Beschrijving

Half Sibling Maternal

Datatype

boolean

Alias
UMLS CUI [1,1]
C0337505
UMLS CUI [1,2]
C1858460
Paternal Half Sibling
Beschrijving

Half Sibling Paternal

Datatype

boolean

Alias
UMLS CUI [1,1]
C0337505
UMLS CUI [1,2]
C0337493
Adopted Sibling?
Beschrijving

Include only adopted and/ or step siblings who live with the proband

Datatype

boolean

Alias
UMLS CUI [1,1]
C0037047
UMLS CUI [1,2]
C0237459
Step Sibling
Beschrijving

Step Sibling

Datatype

boolean

Alias
UMLS CUI [1]
C0337504
Affected Relatives Information
Beschrijving

Affected Relatives Information

Alias
UMLS CUI-1
C1533716
UMLS CUI-2
C0080103
If you are married, has your spouse been diagnosed with MS?
Beschrijving

multiple sclerosis spouse

Datatype

text

Alias
UMLS CUI [1,1]
C0026769
UMLS CUI [1,2]
C0162409
Do you have any children who have been diagnosed with MS?
Beschrijving

multiple sclerosis child

Datatype

text

Alias
UMLS CUI [1,1]
C0026769
UMLS CUI [1,2]
C0008059
If Yes, specify total number of children diagnosed with MS
Beschrijving

multiple sclerosis child

Datatype

integer

Alias
UMLS CUI [1,1]
C0026769
UMLS CUI [1,2]
C0008059
Do you have any aunts and/or uncles who have been diagnosed with MS?
Beschrijving

multiple sclerosis

Datatype

text

Alias
UMLS CUI [1,1]
C0026769
UMLS CUI [1,2]
C2318681
If Yes, specify total number of aunts with MS:
Beschrijving

multiple sclerosis aunts

Datatype

integer

Alias
UMLS CUI [1,1]
C0026769
UMLS CUI [1,2]
C0337576
If Yes, specify total number of uncles with MS:
Beschrijving

multiple sclerosis Uncle

Datatype

integer

Alias
UMLS CUI [1,1]
C0026769
UMLS CUI [1,2]
C0337577
Do you have any first cousins who have been diagnosed with MS?
Beschrijving

multiple sclerosis first cousin

Datatype

text

Alias
UMLS CUI [1,1]
C0026769
UMLS CUI [1,2]
C0337583
If Yes, specify total number of cousins:
Beschrijving

multiple sclerosis first cousin

Datatype

integer

Alias
UMLS CUI [1,1]
C0026769
UMLS CUI [1,2]
C0337583
Affected Relatives Information Data Table
Beschrijving

Affected Relatives Information Data Table

Alias
UMLS CUI-1
C1533716
UMLS CUI-2
C0080103
Gender
Beschrijving

Gender

Datatype

text

Alias
UMLS CUI [1]
C0079399
Date of Birth
Beschrijving

Date of Birth

Datatype

date

Alias
UMLS CUI [1]
C2599455
Age at Death (if applicable)
Beschrijving

Age at Death

Datatype

integer

Alias
UMLS CUI [1]
C1546180
Cause of Death (if applicable)
Beschrijving

Cause of Death

Datatype

text

Alias
UMLS CUI [1]
C0007465
Relationship Details (how related to MS index case):
Beschrijving

Relationship Details

Datatype

text

Alias
UMLS CUI [1]
C0015608
Age at onset of MS
Beschrijving

Age at onset MS

Datatype

integer

Alias
UMLS CUI [1,1]
C0150907
UMLS CUI [1,2]
C0026769
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Similar models

Family History - Affected Relatives and Pedigree

1 Formulieren
Name
Type
Description | Question | Decode (Coded Value)
Datatype
Alias
Item Group
Biological Parents Data Table
C0337465 (UMLS CUI-1)
Date family history
Item
Date pedigree taken
date
C0011008 (UMLS CUI [1,1])
C0241889 (UMLS CUI [1,2])
Item
Is your biological mother a relative of your biological father?
text
C0337465 (UMLS CUI [1])
Biological parent
Code List
Is your biological mother a relative of your biological father?
CL Item
yes, first cousin (1)
CL Item
yes, niece (2)
CL Item
yes, other (3)
CL Item
no (4)
CL Item
unknown (5)
Other
Item
If other, specify:
text
C0205394 (UMLS CUI [1])
Date of birth mother
Item
Date of Birth (mother)
date
C2599455 (UMLS CUI [1,1])
C0026591 (UMLS CUI [1,2])
Item
Diagnosis of MS (mother)?
text
C0026769 (UMLS CUI [1,1])
C0026591 (UMLS CUI [1,2])
multiple sclerosis
Code List
Diagnosis of MS (mother)?
CL Item
yes (1)
CL Item
no (2)
CL Item
unknown (3)
Age at Death mother
Item
Age at Death of mother (if applicable)
integer
C1546180 (UMLS CUI [1,1])
C0026591 (UMLS CUI [1,2])
Cause of Death mother
Item
Cause of Death of mother (if applicable)
text
C0007465 (UMLS CUI [1,1])
C0026591 (UMLS CUI [1,2])
Item
Is this parent a twin?
text
C0041427 (UMLS CUI [1])
Twin
Code List
Is this parent a twin?
CL Item
yes, Monozygotic  (1)
CL Item
yes, Dizygotic  (2)
CL Item
yes, unknown (3)
CL Item
no (4)
CL Item
unknown (5)
Date of birth father
Item
Date of Birth (father)
date
C2599455 (UMLS CUI [1,1])
C0015671 (UMLS CUI [1,2])
Item
Diagnosis of MS (father)?
text
C0026769 (UMLS CUI [1,1])
C0015671 (UMLS CUI [1,2])
multiple sclerosis
Code List
Diagnosis of MS (father)?
CL Item
yes (1)
CL Item
no (2)
CL Item
unknown (3)
Age at Death father
Item
Age at Death of father (if applicable)
integer
C1546180 (UMLS CUI [1,1])
C0015671 (UMLS CUI [1,2])
Cause of Death father
Item
Cause of Death of father (if applicable)
text
C0007465 (UMLS CUI [1,1])
C0015671 (UMLS CUI [1,2])
Item
Is this parent a twin?
text
C0041427 (UMLS CUI [1])
Twin
Code List
Is this parent a twin?
CL Item
yes, Monozygotic  (1)
CL Item
yes, Dizygotic  (2)
CL Item
yes, unknown (3)
CL Item
no (4)
CL Item
unknown (5)
Item Group
Family history
C0241889 (UMLS CUI-1)
Item
Are you a twin?
text
C0041427 (UMLS CUI [1])
Twin
Code List
Are you a twin?
CL Item
yes, Identical Twin  (1)
CL Item
yes, Fraternal Twin  (2)
CL Item
no (3)
CL Item
unknown (4)
twin alive
Item
Is your twin alive?
boolean
C2321281 (UMLS CUI [1,1])
C2321291 (UMLS CUI [1,2])
age at death
Item
If no, specify age at death:
integer
C1546180 (UMLS CUI [1])
Item
Are you adopted?
text
C0237459 (UMLS CUI [1])
multiple sclerosis
Code List
Are you adopted?
CL Item
yes (1)
CL Item
no (2)
CL Item
unknown (3)
age Adoption
Item
If Yes, age at time of adoption
text
C0001779 (UMLS CUI [1,1])
C0001593 (UMLS CUI [1,2])
Item
Do you have any adopted children who were adopted before age 1?
text
C0001779 (UMLS CUI [1,1])
C0237459 (UMLS CUI [1,2])
multiple sclerosis
Code List
Do you have any adopted children who were adopted before age 1?
CL Item
yes (1)
CL Item
no (2)
CL Item
unknown (3)
Item
Do you have any adopted siblings who were adopted before age 1?
text
C0001779 (UMLS CUI [1,1])
C0237459 (UMLS CUI [1,2])
C0037047 (UMLS CUI [1,3])
multiple sclerosis
Code List
Do you have any adopted siblings who were adopted before age 1?
CL Item
yes (1)
CL Item
no (2)
CL Item
unknown (3)
Item
Have any of your siblings been diagnosed with MS?
text
C0026769 (UMLS CUI [1,1])
C0037047 (UMLS CUI [1,2])
multiple sclerosis
Code List
Have any of your siblings been diagnosed with MS?
CL Item
yes (1)
CL Item
no (2)
CL Item
unknown (3)
Item Group
Sibling Information Data Table
C1533716 (UMLS CUI-1)
C0037047 (UMLS CUI-2)
Date of Birth
Item
Date of Birth
date
C2599455 (UMLS CUI [1])
Item
Gender
text
C0079399 (UMLS CUI [1])
Gender
Code List
Gender
CL Item
male (1)
CL Item
female (2)
Full Sibling
Item
Full Sibling
boolean
C2348717 (UMLS CUI [1])
Half Sibling Maternal
Item
Maternal Half Sibling
boolean
C0337505 (UMLS CUI [1,1])
C1858460 (UMLS CUI [1,2])
Half Sibling Paternal
Item
Paternal Half Sibling
boolean
C0337505 (UMLS CUI [1,1])
C0337493 (UMLS CUI [1,2])
Sibling Adopted
Item
Adopted Sibling?
boolean
C0037047 (UMLS CUI [1,1])
C0237459 (UMLS CUI [1,2])
Step Sibling
Item
Step Sibling
boolean
C0337504 (UMLS CUI [1])
Item Group
Affected Relatives Information
C1533716 (UMLS CUI-1)
C0080103 (UMLS CUI-2)
Item
If you are married, has your spouse been diagnosed with MS?
text
C0026769 (UMLS CUI [1,1])
C0162409 (UMLS CUI [1,2])
multiple sclerosis spouse
Code List
If you are married, has your spouse been diagnosed with MS?
CL Item
yes (1)
CL Item
no (2)
CL Item
unknown (3)
CL Item
not applicable (4)
Item
Do you have any children who have been diagnosed with MS?
text
C0026769 (UMLS CUI [1,1])
C0008059 (UMLS CUI [1,2])
multiple sclerosis
Code List
Do you have any children who have been diagnosed with MS?
CL Item
yes (1)
CL Item
no (2)
CL Item
unknown (3)
multiple sclerosis child
Item
If Yes, specify total number of children diagnosed with MS
integer
C0026769 (UMLS CUI [1,1])
C0008059 (UMLS CUI [1,2])
Item
Do you have any aunts and/or uncles who have been diagnosed with MS?
text
C0026769 (UMLS CUI [1,1])
C2318681 (UMLS CUI [1,2])
multiple sclerosis
Code List
Do you have any aunts and/or uncles who have been diagnosed with MS?
CL Item
yes (1)
CL Item
no (2)
CL Item
unknown (3)
multiple sclerosis aunts
Item
If Yes, specify total number of aunts with MS:
integer
C0026769 (UMLS CUI [1,1])
C0337576 (UMLS CUI [1,2])
multiple sclerosis Uncle
Item
If Yes, specify total number of uncles with MS:
integer
C0026769 (UMLS CUI [1,1])
C0337577 (UMLS CUI [1,2])
Item
Do you have any first cousins who have been diagnosed with MS?
text
C0026769 (UMLS CUI [1,1])
C0337583 (UMLS CUI [1,2])
multiple sclerosis
Code List
Do you have any first cousins who have been diagnosed with MS?
CL Item
yes (1)
CL Item
no (2)
CL Item
unknown (3)
multiple sclerosis first cousin
Item
If Yes, specify total number of cousins:
integer
C0026769 (UMLS CUI [1,1])
C0337583 (UMLS CUI [1,2])
Item Group
Affected Relatives Information Data Table
C1533716 (UMLS CUI-1)
C0080103 (UMLS CUI-2)
Item
Gender
text
C0079399 (UMLS CUI [1])
Gender
Code List
Gender
CL Item
male (1)
CL Item
female (2)
Date of Birth
Item
Date of Birth
date
C2599455 (UMLS CUI [1])
Age at Death
Item
Age at Death (if applicable)
integer
C1546180 (UMLS CUI [1])
Cause of Death
Item
Cause of Death (if applicable)
text
C0007465 (UMLS CUI [1])
Relationship Details
Item
Relationship Details (how related to MS index case):
text
C0015608 (UMLS CUI [1])
Age at onset MS
Item
Age at onset of MS
integer
C0150907 (UMLS CUI [1,1])
C0026769 (UMLS CUI [1,2])
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