ID

16033

Beskrivning

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.

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https://www.commondataelements.ninds.nih.gov/

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  1. 2016-06-26 2016-06-26 -
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26 juni 2016

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NINDS CDE Family History - Affected Relatives and Pedigree Multiple Sclerosis

Engelsk

Family History - Affected Relatives and Pedigree

1 Formulär  
Biological Parents Data Table
Beskrivning

Biological Parents Data Table

Alias
UMLS CUI-1
C0337465
Date pedigree taken
Beskrivning

Date family history

Datatyp

date

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

Biological parent

Datatyp

text

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

Other

Datatyp

text

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

Date of birth mother

Datatyp

date

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

multiple sclerosis mother

Datatyp

text

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

Age at Death mother

Datatyp

integer

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

Cause of Death mother

Datatyp

text

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

Twin

Datatyp

text

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

Date of birth father

Datatyp

date

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

multiple sclerosis father

Datatyp

text

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

Age at Death father

Datatyp

integer

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

Cause of Death father

Datatyp

text

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

Twin

Datatyp

text

Alias
UMLS CUI [1]
C0041427
Family history
Beskrivning

Family history

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

Twin

Datatyp

text

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

twin alive

Datatyp

boolean

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

age at death

Datatyp

integer

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

Adoption

Datatyp

text

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

age Adoption

Datatyp

text

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

age Adoption of child

Datatyp

text

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

age adopted siblings

Datatyp

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?
Beskrivning

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

Datatyp

text

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

Sibling Information Data Table

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

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

Datatyp

date

Alias
UMLS CUI [1]
C2599455
Gender
Beskrivning

Gender

Datatyp

text

Alias
UMLS CUI [1]
C0079399
Full Sibling
Beskrivning

Full Sibling

Datatyp

boolean

Alias
UMLS CUI [1]
C2348717
Maternal Half Sibling
Beskrivning

Half Sibling Maternal

Datatyp

boolean

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

Half Sibling Paternal

Datatyp

boolean

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

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

Datatyp

boolean

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

Step Sibling

Datatyp

boolean

Alias
UMLS CUI [1]
C0337504
Affected Relatives Information
Beskrivning

Affected Relatives Information

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

multiple sclerosis spouse

Datatyp

text

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

multiple sclerosis child

Datatyp

text

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

multiple sclerosis child

Datatyp

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?
Beskrivning

multiple sclerosis

Datatyp

text

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

multiple sclerosis aunts

Datatyp

integer

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

multiple sclerosis Uncle

Datatyp

integer

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

multiple sclerosis first cousin

Datatyp

text

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

multiple sclerosis first cousin

Datatyp

integer

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

Affected Relatives Information Data Table

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

Gender

Datatyp

text

Alias
UMLS CUI [1]
C0079399
Date of Birth
Beskrivning

Date of Birth

Datatyp

date

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

Age at Death

Datatyp

integer

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

Cause of Death

Datatyp

text

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

Relationship Details

Datatyp

text

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

Age at onset MS

Datatyp

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 Formulär
Name
Typ
Description | Question | Decode (Coded Value)
Datatyp
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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