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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: Other Clinical Data
CRF: Neuropathology Data Form
Item count: 175 (175 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
C08148
Neuropath specimen identifier number
NeuropthSpecmnIDNum
Unique identification number given to the neuropathology specimen
Neuropath ID
  
Alphanumeric
No additional instructions
No references available
Adult;Pediatric
Supplemental
3.0
7/22/2013
Aliases for variable name not defined
Neuropathology Data Form
Other Clinical Data
Assessments and Examinations
Neuropathology specimen identifier
255
Free-Form Entry
       
C06005
Data collected date and time
DataCollDateTime
Date (and time, if applicable and known) the data were collected. This may be the date/time a particular examination or procedure was performed.
Date form completed
  
Date or Date & Time
Record the date/time according to the ISO 8601, the International Standard for the representation of dates and times (http://www.iso.org/iso/home.html). The date/time should be recorded to the level of granularity known (e.g., year, year and month, complete date plus hours and minutes, etc.).
No references available
Adult;Pediatric
Supplemental
3.0
7/24/2013
Aliases for variable name not defined
Neuropathology Data Form
Other Clinical Data
Assessments and Examinations
Data collected date and time
 
Free-Form Entry
       
C18667
Data source other text
DataSourcOTH
The free-text field related to 'Data source' specifying other text. Source of the data provided on the case report form
Other, specify
  
Alphanumeric
No additional instructions
No references available
Adult;Pediatric
Supplemental
1.0
5/27/2014
Aliases for variable name not defined
Neuropathology Data Form
Other Clinical Data
Assessments and Examinations
 
4000
Free-Form Entry
       
C08147
Data source
DataSource
Source of the data provided on the case report form
DATA SOURCE
Participant/subject;Mother;Father;Sister;Brother;Son;Daughter;Family, specify relation;Friend;Physician;Chart/Medical record;Unknown;Spouse;Other, specify;
Participant/subject;Mother;Father;Sister;Brother;Son;Daughter;Family, specify relation;Friend;Physician;Chart/Medical record;Unknown;Spouse;Other, specify;
Alphanumeric
No additional instructions
No references available
Adult;Pediatric
Supplemental
3.0
7/20/2013
Aliases for variable name not defined
Neuropathology Data Form
Other Clinical Data
Assessments and Examinations
Data source
 
Multiple Pre-Defined Values Selected
       
C00035
Gender type
GenderTyp
Self-reported gender of the participant/subject. Gender is the socially constructed identity of sex. Gender is equated with phenotypic sex. Gender may differ from the sex of an individual determined genetically.
Gender
Male;Female;Unknown;Unspecified;
Male;Female;Unknown;Undifferentiated/Indeterminant/Intersex;
Alphanumeric
Choose one
The NIH Guidelines on Inclusion of Women and Minorities as Subjects in Clinical Research: The Office of Management and Budget Directive No. 15 (http://grants.nih.gov/grants/funding/women_min/guidelines_update.htm)
Adult;Pediatric
Core
3.0
8/28/2013
caBIG: PRSN_GENDER_TXT_TP; SCI CDEs: GENDER
Neuropathology Data Form
Other Clinical Data
Assessments and Examinations
Gender type
 
Single Pre-Defined Value Selected
     
2200604
 
C18669
Diagnosis final clinical death other text
DiagnosFinalClinDeathOTH
The free-text field related to 'Diagnosis final clinical death type' specifying other text. Physician's final clinical diagnosis for the participant/subject
Other, specify
  
Alphanumeric
No additional instructions
No references available
Adult
Supplemental
1.0
5/27/2014
Aliases for variable name not defined
Neuropathology Data Form
Other Clinical Data
Assessments and Examinations
 
4000
Free-Form Entry
       
C00007
Birth date
BirthDate
Date (and time, if applicable and known) the participant/subject was born
Date of Birth
  
Date or Date & Time
Record the date of birth to the level of precision known (e.g., month/day/year, year, month/year, etc). The preferred format for recording date is mm/dd/yyyy. 99/99/9999 can be used to indicate an unknown date.
No references available
Adult;Pediatric
Core
3.0
7/25/2013
caBIG: PER_BIR_DT; SCI CDEs: BIRTHDT
Neuropathology Data Form
Other Clinical Data
Assessments and Examinations
Birth date
 
Free-Form Entry
     
793
 
C08149
Diagnosis final clinical death type
DiagnosFinalClinDeathTyp
Physician's final clinical diagnosis for the participant/subject
FINAL CLINICAL DIAGNOSIS BEFORE DETAH
Huntington disease with genetically confirmed expansion of HD-IT15 CAG repeats;Huntington disease without genetically confirmed expansion of HD-IT15 CAG repeats;Huntington disease-like 2 genetically confirmed expansion of trinucleotide repeats;Huntington disease-like without genetically confirmed expansion of trinucleotide repeats;Corticobasal degeneration;Dentato-rubro-pallido-luysian atrophy (DRPLA), with genetically confirmed expansion of CAG repeats;Dentato-rubro-pallido-luysian atrophy (DRPLA), without genetically confirmed expansion of CAG repeats;Fragile X syndrome with genetically confirmed expansion of CGG repeats;Fragile X syndrome without genetically confirmed expansion of CGG repeats;Friedreich ataxia with genetically confirmed expansion of GAA repeats;Friedreich ataxia without genetically confirmed expansion of GAA repeats;Frontotemporal lobar degeneration;Hepatolenticular degeneration or Wilson disease;Kennedy disease with genetically confirmed expansion of CAG repeats;Kennedy disease without genetically confirmed expansion of CAG repeats;Multiple system atrophy;Neuroacanthocytosis;Pantothenate kinase-associated neurodegeneration (Hallervorden-Spatz syndrome);Pick disease;Progressive supranuclear palsy;Senile chorea or vascular chorea;Spinocerebellar ataxia with genetically confirmed expansion of either CAG or CTG repeats;Spinocerebellar ataxia without genetically confirmed expansion of either CAG or CTG repeats;Subacute sclerosing panencephalitis;Sydenham chorea;Tardive dyskinesia;Chorea gravidarum;Other, specify;
Huntington disease with genetically confirmed expansion of HD-IT15 CAG repeats;Huntington disease without genetically confirmed expansion of HD-IT15 CAG repeats;Huntington disease-like 2 genetically confirmed expansion of trinucleotide repeats;Huntington disease-like without genetically confirmed expansion of trinucleotide repeats;Corticobasal degeneration;Dentato-rubro-pallido-luysian atrophy (DRPLA), with genetically confirmed expansion of CAG repeats;Dentato-rubro-pallido-luysian atrophy (DRPLA), without genetically confirmed expansion of CAG repeats;Fragile X syndrome with genetically confirmed expansion of CGG repeats;Fragile X syndrome without genetically confirmed expansion of CGG repeats;Friedreich ataxia with genetically confirmed expansion of GAA repeats;Friedreich ataxia without genetically confirmed expansion of GAA repeats;Frontotemporal lobar degeneration;Hepatolenticular degeneration or Wilson disease;Kennedy disease with genetically confirmed expansion of CAG repeats;Kennedy disease without genetically confirmed expansion of CAG repeats;Multiple system atrophy;Neuroacanthocytosis;Pantothenate kinase-associated neurodegeneration (Hallervorden-Spatz syndrome);Pick disease;Progressive supranuclear palsy;Senile chorea or vascular chorea;Spinocerebellar ataxia with genetically confirmed expansion of either CAG or CTG repeats;Spinocerebellar ataxia without genetically confirmed expansion of either CAG or CTG repeats;Subacute sclerosing panencephalitis;Sydenham chorea;Tardive dyskinesia;Chorea gravidarum;Other, specify;
Alphanumeric
No additional instructions
No references available
Adult
Supplemental
3.0
7/22/2013
Aliases for variable name not defined
Neuropathology Data Form
Other Clinical Data
Assessments and Examinations
Diagnosis Parkinsonian final type
 
Multiple Pre-Defined Values Selected
       
C04802
Death date and time
DeathDateTime
Date (and time, if known) of participant's/subject's death
Date of Death; Time of Death
  
Date or Date & Time
Record the date/time according to the ISO 8601, the International Standard for the representation of dates and times (http://www.iso.org/iso/home.html). The date/time should be recorded to the level of granularity known (e.g., year, year and month, complete date plus hours and minutes, etc.).
ISO 8601 - http://www.iso.org/iso/iso_catalogue.htm
Adult;Pediatric
Supplemental
3.0
7/24/2013
Aliases for variable name not defined
Neuropathology Data Form
Other Clinical Data
Assessments and Examinations
Death date and time
 
Free-Form Entry
     
2004152
 
C08151
Diagnosis final clinical death date
DiagnosFinalClinDeathDate
Date of participant's/subject's final clinical diagnosis
Date of final clinical diagnosis
  
Date or Date & Time
Record the date/time according to the ISO 8601, the International Standard for the representation of dates and times (http://www.iso.org/iso/home.html). The date/time should be recorded to the level of granularity known (e.g., year, year and month, complete date plus hours and minutes, etc.).
ISO 8601 - http://www.iso.org/iso/iso_catalogue.htm
Adult
Supplemental
3.0
7/22/2013
Aliases for variable name not defined
Neuropathology Data Form
Other Clinical Data
Assessments and Examinations
Diagnosis final date and time
 
Free-Form Entry
       
C14969
Cytosine adenine guanine repeat expansion result
CAGRepeatExpansionReslt
Size of expansion of HD-IT 15 cytosine adenine guanine (CAG) repeats
CAG repeat HD-IT 15 CAG repeat expansion
  
Numeric Values
If the size of the HD-IT 15 CAG expansion is unknown, record as Not Known in the next data element.
No references available
Adult
Supplemental
3.0
7/14/2013
Aliases for variable name not defined
Neuropathology Data Form
Other Clinical Data
Assessments and Examinations
CAG repeat expansion result
 
Free-Form Entry
       
C18153
Data unknown text
DataUnknwnTxt
The free-text field to Mark an "X" in to record if data are unknown or not available.
CAG repeat HD-IT 15 CAG repeat expansion unknown
  
Alphanumeric
If the size of the HD-IT 15 CAG expansion is unknown, record as Not Known in the next data element.
No references available
Adult;Pediatric
Supplemental
3.0
7/17/2013
Aliases for variable name not defined
Neuropathology Data Form
Other Clinical Data
Assessments and Examinations
 
20
Free-Form Entry
       
C08152
Brain tissue frozen indicator
BrainTissFrozenInd
Indicator of whether banked frozen brain tissue is accessible
Is banked frozen brain tissue available?
Yes;No;
Yes;No;
Alphanumeric
No additional instructions
No references available
Adult;Pediatric
Supplemental
3.0
7/22/2013
Aliases for variable name not defined
Neuropathology Data Form
Other Clinical Data
Assessments and Examinations
Brain tissue frozen indicator
 
Single Pre-Defined Value Selected
       
C08153
Brain tissue formalin-fixed indicator
BrainTissFormalinFixedInd
Indicator of whether formalin-fixed brain tissue is accessible
Is formalin-fixed brain tissue available?
Yes;No;
Yes;No;
Alphanumeric
No additional instructions
No references available
Adult;Pediatric
Supplemental
3.0
7/22/2013
Aliases for variable name not defined
Neuropathology Data Form
Other Clinical Data
Assessments and Examinations
Brain tissue formalin-fixed indicator
 
Single Pre-Defined Value Selected
       
C14970
Brain harvesting date and time
BrainHarvestingDateTime
Date and time, if known the brain was harvested
Date of Harvesting; Time of Harvesting
  
Date or Date & Time
Record the date/time according to the ISO 8601, the International Standard for the representation of dates and times (http://www.iso.org/iso/home.html). The date/time should be recorded to the level of granularity known (e.g., year, year and month, complete date plus hours and minutes, etc.).
ISO 8601 - http://www.iso.org/iso/iso_catalogue.htm
Adult
Supplemental
3.0
7/14/2013
Aliases for variable name not defined
Neuropathology Data Form
Other Clinical Data
Assessments and Examinations
Harvesting date and time
 
Free-Form Entry
       
C08154
Brain tissue paraffin-embedded indicator
BrainTissParaffinEmbeddedInd
Indicator of whether paraffin-embedded blocks of brain tissue are accessible
Are paraffin-embedded blocks of brain tissue available?
Yes;No;
Yes;No;
Alphanumeric
No additional instructions
No references available
Adult;Pediatric
Supplemental
3.0
7/22/2013
Aliases for variable name not defined
Neuropathology Data Form
Other Clinical Data
Assessments and Examinations
Brain tissue paraffin-embedded indicator
 
Single Pre-Defined Value Selected
       
C08155
CSF postmortem indicator
CSFPstmortemInd
Indicator of whether banked postmortem cerebrospinal fluid (CSF) is accessible
Is banked postmortem CSF available?
Yes;No;
Yes;No;
Alphanumeric
No additional instructions
No references available
Adult;Pediatric
Supplemental
3.0
7/22/2013
Aliases for variable name not defined
Neuropathology Data Form
Other Clinical Data
Assessments and Examinations
CSF postmortem indicator
 
Single Pre-Defined Value Selected
       
C08156
Specimen other postmortem indicator
SpecmnOtherPstmortemInd
Indicator whether other banked postmortem specimens (e.g., blood, spinal cord, nerve, muscle) exist
Are other banked postmortem specimens available? (e.g. blood, spinal cord, nerve, muscle)
Yes;No;
Yes;No;
Alphanumeric
If YES is answered then explain what other type(s) of postmortem samples exist
No references available
Adult;Pediatric
Supplemental
3.0
7/22/2013
Aliases for variable name not defined
Neuropathology Data Form
Other Clinical Data
Assessments and Examinations
Specimen other postmortem indicator
 
Single Pre-Defined Value Selected
       
C08157
Photograph macroscopic indicator
PhotographsMacroscopicInd
Indicator of whether macroscopic photographs were taken
Are macroscopic photographs available?
Yes;No;
Yes;No;
Alphanumeric
If YES is answered explain what macroscopic photographs were taken
No references available
Adult;Pediatric
Supplemental
3.0
7/22/2013
Aliases for variable name not defined
Neuropathology Data Form
Other Clinical Data
Assessments and Examinations
Photographs macroscopic indicator
 
Single Pre-Defined Value Selected
       
C17398
Specimen other postmortem text
SpecOthPostmortText
Text area to describe other banked postmortem specimens (e.g., blood, spinal cord, nerve, muscle) exist
Yes (Describe)
  
Alphanumeric
No instructions available
No references available
Adult;Pediatric
Supplemental
1.0
12/20/2012
Aliases for variable name not defined
Neuropathology Data Form
Other Clinical Data
Assessments and Examinations
Specimen other postmortem text
255
Free-Form Entry
       
C02411
Laterality type
LatTyp
Laterality type relative to the anatomic site of the body examined or affected
   
Alphanumeric
No instructions available
No references available
Adult;Pediatric
Supplemental
3.0
8/28/2013
Aliases for variable name not defined
Neuropathology Data Form
Other Clinical Data
Assessments and Examinations
Laterality type
 
Single Pre-Defined Value Selected
       
C17752
Photographs macroscopic text
PhotographsMacroscopicTxt
Description of available macroscopic photographs
Yes(Describe…)
  
Alphanumeric
No instructions available
No references available
Adult
Supplemental
3.0
8/30/2013
Aliases for variable name not defined
Neuropathology Data Form
Other Clinical Data
Assessments and Examinations
 
255
Free-Form Entry
       
C18992
Macroscopical examination fresh brain other text
MacroExamFreshBrainOTH
The free-text field related to 'Macroscopical examination fresh brain source' specifying other text. The part(s) of the fresh brain used for macroscopical examination
Other, specify
  
Alphanumeric
Indicate the parts selected for evaluation
No references available
Adult
Supplemental
3.0
7/14/2013
Aliases for variable name not defined
Neuropathology Data Form
Other Clinical Data
Assessments and Examinations
 
4000
Free-Form Entry
       
C14971
Macroscopical examination fresh brain source
MacroExamFreshBrainSource
The part(s) of the fresh brain used for macroscopical examination
Macroscopical examination Fresh
Whole brain;Left half brain;Right half brain;Not available;Other specify;
Whole brain;Left half brain;Right half brain;Not available;Other specify;
Alphanumeric
Indicate the parts selected for evaluation
No references available
Adult
Supplemental
3.0
7/14/2013
Aliases for variable name not defined
Neuropathology Data Form
Other Clinical Data
Assessments and Examinations
Macroscopial examination fresh brain source
 
Single Pre-Defined Value Selected
       
C14972
Macroscopical examination fixed brain source
MacroExamFixedBrainSource
The part(s) of the fixed brain used for macroscopical examination
Macroscopical examination Fixed
Whole brain;Left half brain;Right half brain;Not available;Other, specify;
Whole brain;Left half brain;Right half brain;Not available;Other, specify;
Alphanumeric
Indicate the parts selected for evaluation
No references available
Adult
Supplemental
3.0
7/14/2013
Aliases for variable name not defined
Neuropathology Data Form
Other Clinical Data
Assessments and Examinations
Macroscopical examination fixed brain source
 
Single Pre-Defined Value Selected
       
C18993
Macroscopical examination fixed brain other text
MacroExamFixedBrainOTH
The free-text field related to 'Macroscopical examination fixed brain source' specifying other text. The part(s) of the fixed brain used for macroscopical examination
Other, specify
  
Alphanumeric
Indicate the parts selected for evaluation
No references available
Adult
Supplemental
3.0
7/14/2013
Aliases for variable name not defined
Neuropathology Data Form
Other Clinical Data
Assessments and Examinations
 
4000
Free-Form Entry
       
03-22-2017
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