of0
 
CDE Detailed Report
This report contains detailed information about the selected CDEs.
Note: If at least one CDE was selected from a copyright- or trademark-protected instrument/scale then all of the CDEs from that instrument/scale are included in this report.
Disease: Huntington's Disease
Sub-Domain: General Health History
CRF: Family History
Item count: 18 (18 distinct CDEs)
CDE ID
CDE Name
Variable Name
Definition / Description
Question Text
Permissible Value
Description
Data Type
Instructions
References
Population
Classification (e.g., Core)
Version #
Version Date
Aliases for Variable Name
CRF Module / Guideline
© or TM
Sub-Domain
Domain
Previous Title
Size
Input Restrictions
Min Value
Max Value
Measurement Type
LOINC ID
SNOMED
caDSR ID
CDISC ID
C10813
Adopted indicator
AdoptedInd
Whether the subject/participant was adopted
Are you adopted
Yes;No;
Yes;No;
Alphanumeric
If the participant/ subject reports they are adopted, then ask if they have information about their biological relatives. If yes, continue to complete the form. If no, end completion of form.
No references available
Adult;Pediatric
Supplemental
3.0
7/22/2013
Aliases for variable name not defined
Family History
General Health History
Participant History and Family History
Adopted indicator
 
Single Pre-Defined Value Selected
       
C17681
Family history collection source
FamHxCollSrce
The source of collected family history data
From whom/what was the family history collected
Participant/subject;Informant;Medical records;
Participant/subject;Informant;Medical records;
Alphanumeric
Choose all that apply
No references available
Adult
Supplemental
3.0
8/30/2013
Aliases for variable name not defined
Family History
General Health History
Participant History and Family History
  
Multiple Pre-Defined Values Selected
       
C17682
Family history collection source informant specify type
FamHxCollSrceInformSpcfyTyp
The type of informant the family history data was collected from
If informant, specify type
Spouse (including common law partner);Parent;Sibling;Child;Partner;Friend;Other relative;Other non-relative;
Spouse (including common law partner);Parent;Sibling;Child;Partner;Friend;Other relative;Other non-relative;
Alphanumeric
No instructions available
No references available
Adult
Supplemental
3.0
8/30/2013
Aliases for variable name not defined
Family History
General Health History
Participant History and Family History
  
Single Pre-Defined Value Selected
       
C18679
Family history medical condition relative other text
FamHistMedclCondReltvOTH
The free-text field related to 'Family history medical condition relative type' specifying other text. Relationship of the family member or ancestor with the medical condition or health related event to the participant/subject
Other, specify
  
Alphanumeric
If no first degree relatives have been diagnosed with HD, do not complete family history for second degree relatives. If either or both of the participant's/subject's parents have been diagnosed with HD, complete family history for second degree relatives by considering only the parent(s) diagnosed with HD to determine maternal/paternal relationship.
Krassioukov A, Alexander MS, Karlsson AK, Donovan W, Mathias CJ, Biering-Sørensen F. International spinal cord injury cardiovascular function basic data set. Spinal Cord. 2010 Aug;48(8):586-90.
Adult;Pediatric
Supplemental
1.0
5/27/2014
Aliases for variable name not defined
Family History
General Health History
Participant History and Family History
 
4000
Free-Form Entry
     
3165810
 
C00722
Family history medical condition relative type
FamHistMedclCondReltvTy
Relationship of the family member or ancestor with the medical condition or health related event to the participant/subject
Relative
Mother;Father;Full sibling;Half sibling;Child;Maternal grandmother;Paternal grandmother;Maternal grandfather;Paternal grandfather;Maternal aunt;Paternal aunt;Maternal uncle;Paternal uncle;Maternal niece/nephew;Paternal niece/nephew;Grandchild;Maternal cousin;Paternal cousin;Great-grandchild;Other, specify;
Mother;Father;Full sibling;Half sibling;Child;Maternal grandmother;Paternal grandmother;Maternal grandfather;Paternal grandfather;Maternal aunt;Paternal aunt;Maternal uncle;Paternal uncle;Maternal niece/nephew;Paternal niece/nephew;Grandchild;Maternal cousin;Paternal cousin;Great-grandchild;Other, specify;
Alphanumeric
If no first degree relatives have been diagnosed with HD, do not complete family history for second degree relatives. If either or both of the participant's/subject's parents have been diagnosed with HD, complete family history for second degree relatives by considering only the parent(s) diagnosed with HD to determine maternal/paternal relationship.
Krassioukov A, Alexander MS, Karlsson AK, Donovan W, Mathias CJ, Biering-Sørensen F. International spinal cord injury cardiovascular function basic data set. Spinal Cord. 2010 Aug;48(8):586-90.
Adult;Pediatric
Supplemental
3.0
7/24/2013
Aliases for variable name not defined
Family History
General Health History
Participant History and Family History
Family history medical condition relative type
 
Multiple Pre-Defined Values Selected
     
3165810
 
C08000
Family history relative type total member number
FmlyHistRelTypeTotalMembrNum
Number of total family relatives with a specific type of prior medical history.
Number of Family Members
  
Numeric Values
Prepopulated values are provided when possible; data is solicited for those relatives that can have variable values. Some relative types are prefilled with the total number of possible family members (e.g., biological mother is 1)
No references available
Adult
Supplemental
3.0
7/22/2013
Aliases for variable name not defined
Family History
General Health History
Participant History and Family History
Family history relative type total member number
 
Free-Form Entry
0
100
     
C14950
Family history relative order number
FmlyHistRelOrderNumber
A numerical number assigned to each relative, if more than one
Number
  
Numeric Values
Answer for each family member with that relationship to the participant/subject, if more than 1.
No references available
Adult
Supplemental
3.0
7/14/2013
Aliases for variable name not defined
Family History
General Health History
Participant History and Family History
Family history relative order number
 
Free-Form Entry
       
C14943
Family history relative deceased indicator
FamHxReltvDeceaseInd
Indicator of whether family member is deceased
Deceased?
Yes;No;Unknown;
Yes;No;Unknown;
Alphanumeric
Answer for each family member with that relationship to the participant/subject, if more than 1.
No references available
Adult
Supplemental
3.0
7/14/2013
Aliases for variable name not defined
Family History
General Health History
Participant History and Family History
Deceased indicator
 
Single Pre-Defined Value Selected
       
C14944
Family history relative age value
FmlyHistRelAgeVal
Value for participant's/subject's family member's current age.
Current Age
19-44;45-64;65 years and over;
19-44;45-64;65 years and over;
Numeric Values
Answer for each family member with that relationship to the participant/subject, if more than 1. Answer in years for each family member. Only answer current age OR age at death (if applicable), not both.
No references available
Adult
Supplemental
3.0
7/14/2013
Aliases for variable name not defined
Family History
General Health History
Participant History and Family History
Family history relative age value
 
Single Pre-Defined Value Selected
       
C14945
Family history relative death age value
FmlyHistRelDeathAgeVal
Value for participant's/subject's family member's age at death, if deceased.
Current Age
19-44;45-64;65 years and over;
19-44;45-64;65 years and over;
Numeric Values
Answer for each family member with that relationship to the participant/subject, if more than 1. If the family member is deceased, record age at death. Only answer current age OR age at death (if applicable), not both.
No references available
Adult
Supplemental
3.0
7/14/2013
Aliases for variable name not defined
Family History
General Health History
Participant History and Family History
Family history relative death age
 
Single Pre-Defined Value Selected
       
C00720
Family history medical condition type
FamHistMedclCondTyp
Type of medical condition or health related event for which the family history is taken
Diagnosis
  
Alphanumeric
Choose all that apply for all relatives identified Collected from the subject, without requiring supportive clinical data. HD is defined as a diagnosis of HD made by a health care professional.
No references available
Adult;Pediatric
Supplemental
3.0
7/24/2013
Aliases for variable name not defined
Family History
General Health History
Participant History and Family History
Family history medical condition type
 
Multiple Pre-Defined Values Selected
     
3165585
 
C18678
Family history medical condition other text
FamHistMedclCondOTH
The free-text field related to 'Family history medical condition type' specifying other text. Type of medical condition or health related event for which the family history is taken
Other, specify
  
Alphanumeric
Choose all that apply for all relatives identified Collected from the subject, without requiring supportive clinical data. HD is defined as a diagnosis of HD made by a health care professional.
No references available
Adult;Pediatric
Supplemental
1.0
5/27/2014
Aliases for variable name not defined
Family History
General Health History
Participant History and Family History
 
4000
Free-Form Entry
     
3165585
 
C14946
Family history medical condition relative count
FmlyHistMedclCondRelCt
Number of family members with medical condition
Number of Family Members
  
Numeric Values
Record the number of family members for each medical condition selected.
No references available
Adult
Supplemental
3.0
7/14/2013
Aliases for variable name not defined
Family History
General Health History
Participant History and Family History
Family history medical condition relative number
 
Free-Form Entry
       
C08001
Family history relative type biological sample in repository indicator
FmlyHistRelTypBioSampleRepInd
Indicator of whether the participant's/subject's family member has donated biological sample(s) to a repository
Family Members with Sample(s) in Repository
Yes;No;Unknown;
Yes;No;Unknown;
Alphanumeric
No additional instructions
No references available
Adult;Pediatric
Supplemental
3.0
7/22/2013
Aliases for variable name not defined
Family History
General Health History
Participant History and Family History
Family history relative type biological sample in repository indicator
 
Single Pre-Defined Value Selected
       
C22864
Diagnosis Huntingtons Disease parent suspect indicator
DiagHDParentSuspectInd
Indicate whether there is a possibility of an HD diagnosis for a parent
Suspect parent HD diagnosis
Yes;No;Unknown;
Yes;No;Unknown;
Alphanumeric
No instructions available
No references available
Adult;Pediatric
Supplemental
1.0
12/1/2016
Aliases for variable name not defined
Family History
General Health History
Participant History and Family History
  
Single Pre-Defined Value Selected
       
C14947
Family history relative type biological sample in repository count
FmlyHistRelTypBioSamRepCt
The number of family members that have samples in a repository
Number of Family Members with Sample(s) in Repository
  
Numeric Values
Specify number of family members if Yes is checked for Family history relative type biological sample in repository indicator.
No references available
Adult
Supplemental
3.0
7/14/2013
Aliases for variable name not defined
Family History
General Health History
Participant History and Family History
Family history relative type biological sample in repository number
 
Free-Form Entry
       
C14948
Family history relative type no biological sample in repository count
FmlyHistRelTypNoBioSamRepCt
The number of family members that do not have samples in a repository
No
  
Numeric Values
Specify number of family members if No is checked for Family history relative type biological sample in repository indicator.
No references available
Adult
Supplemental
3.0
7/14/2013
Aliases for variable name not defined
Family History
General Health History
Participant History and Family History
Family history relative type no biological sample in repository number
 
Free-Form Entry
       
C14949
Family history relative type unknown biological sample in repository count
FmlyHistRelTypUnknwBioSamRepCt
The number of family members who are unsure if they have samples in a repository
Unknown
  
Numeric Values
Specify number of family members if Unknown is checked for Family history relative type biological sample in repository indicator.
No references available
Adult
Supplemental
3.0
7/14/2013
Aliases for variable name not defined
Family History
General Health History
Participant History and Family History
Family history relative type unknown biological sample in repository number
 
Free-Form Entry
       
11-23-2017
Page 1 of 1