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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: History of Disease/Injury Event
CRF: Medical History of Huntington's Disease
Item count: 28 (28 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
C17733
Person completing the form name
PrsnCompletingFormName
Name of person completing the form
Name of person completing the form
  
Alphanumeric
No instructions available
No references available
Adult
Supplemental
3.0
8/30/2013
Aliases for variable name not defined
Medical History of Huntington's Disease
History of Disease/Injury Event
Disease/Injury Related Events
 
255
Free-Form Entry
       
C17734
Person completing the form title text
PrsnCompletingFormTitleTxt
Title/Credentials/Training of the person completing the form
Title/Credentials/Training of the person completing the form
  
Alphanumeric
No instructions available
No references available
Adult
Supplemental
3.0
8/30/2013
Aliases for variable name not defined
Medical History of Huntington's Disease
History of Disease/Injury Event
Disease/Injury Related Events
 
255
Free-Form Entry
       
C17735
Motor symptom first appeared self report status
MotorSymptmFrstSelfReprtStatus
The status of the first motor symptom(s) as noted by the participant/subject
Date of first motor symtpom(s) as noted by participant/subject.
Not applicable;
Not applicable;
Alphanumeric
(skip to question 4)
No references available
Adult
Supplemental
3.0
8/30/2013
Aliases for variable name not defined
Medical History of Huntington's Disease
History of Disease/Injury Event
Disease/Injury Related Events
  
Single Pre-Defined Value Selected
       
C18989
Huntingtons Disease motor symptom first appeared self report other text
HDMotorSymptmFrstAppSelfRepOTH
The free-text field related to 'Huntingtons Disease motor symptom first appeared self report type' specifying other text. The type of first motor symptoms described by the participant/subject
Other, specify
  
Alphanumeric
Choose all that apply.
No references available
Adult
Supplemental
3.0
7/14/2013
Aliases for variable name not defined
Medical History of Huntington's Disease
History of Disease/Injury Event
Disease/Injury Related Events
 
4000
Free-Form Entry
       
C14952
Huntingtons Disease motor symptom first appeared self report type
HDMotorSymptmFrstAppSelfRepTyp
The type of first motor symptoms described by the participant/subject
Indicate first motor symptom(s) as noted by participant/subject
Chorea;Fine motor coordination;Gross motor coordination;Gait disorder;Balance impairment;Dysphagia;Dysarthria;Involuntary vocalization/sounds;Slowness of movement;Tremor;Other symptoms, specify;Unable to remember first symptom;
Chorea;Fine motor coordination;Gross motor coordination;Gait disorder;Balance impairment;Dysphagia;Dysarthria;Involuntary vocalization/sounds;Slowness of movement;Tremor;Other symptoms, specify (i.e., motor symptoms, involuntary movements);Unable to remember first symptom (s);
Alphanumeric
Choose all that apply.
No references available
Adult
Supplemental
3.0
7/14/2013
Aliases for variable name not defined
Medical History of Huntington's Disease
History of Disease/Injury Event
Disease/Injury Related Events
HD self report initial motor symptom type
 
Multiple Pre-Defined Values Selected
       
C14953
Chorea anatomic site
ChoreaAntmicSite
Anatomic site of the participant's/subject's body affected by chorea
If Chorea, indicate location
Face;Upper extremities;Lower extremities;Trunk;
Face;Upper extremities;Lower extremities;Trunk;
Alphanumeric
Choose all that apply.
No references available
Adult
Supplemental
3.0
7/14/2013
Aliases for variable name not defined
Medical History of Huntington's Disease
History of Disease/Injury Event
Disease/Injury Related Events
Chorea anatomic site
 
Multiple Pre-Defined Values Selected
       
C14954
Motor symptom improvement since diagnosis indicator
MotorSymptmImprvmntSncDiagInd
the indicator whether motor symptoms have improved since the first diagnosis.
Have motor symptoms improved since first diagnosis?
Yes;No;
Yes;No;
Alphanumeric
No additional instructions
No references available
Adult
Supplemental
3.0
7/14/2013
Aliases for variable name not defined
Medical History of Huntington's Disease
History of Disease/Injury Event
Disease/Injury Related Events
Motor symptom improvement indicator
 
Single Pre-Defined Value Selected
       
C17736
Symptoms first appeared informant status
MotorSymptmFrstApInformantStat
The status whether the first motor symptom(s) were noted by the person completing the form.
Date of first motor symtpom(s) as noted by informant
Not applicable;
Not applicable;
Alphanumeric
Skip to question 6
No references available
Adult
Supplemental
3.0
8/30/2013
Aliases for variable name not defined
Medical History of Huntington's Disease
History of Disease/Injury Event
Disease/Injury Related Events
  
Single Pre-Defined Value Selected
       
C14951
Motor symptom first appeared self report date and time
MotorSymptmFrstApSelfReprtDate
Date of the first motor symptom(s) as noted by the participant/subject
Date of first motor symtpom(s) as noted by participant/subject.
  
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.). If participant/subject is unable to answer the question (e.g. due to dementia, disability, etc.), Not Applicable should be selected.
No references available
Adult
Supplemental
3.0
7/14/2013
Aliases for variable name not defined
Medical History of Huntington's Disease
History of Disease/Injury Event
Disease/Injury Related Events
Symptoms first appeared self report date and time
 
Free-Form Entry
       
C14955
Motor symptom first appeared informant date
MotorSymptmFrstAppInformanDate
Date the first motor symptom(s) were noted by the person completing the form.
Date of first motor symtpom(s) as noted by informant
  
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.). Informant is a person that has known the participant/subject since symtpm(s) onset. If informant has not known participant/subject since symptom(s) onset, Not Applicable should be selected.
No references available
Adult
Supplemental
3.0
7/14/2013
Aliases for variable name not defined
Medical History of Huntington's Disease
History of Disease/Injury Event
Disease/Injury Related Events
Symptoms first appeared informant date and time
 
Free-Form Entry
       
C18990
Huntingtons Disease motor symptom first appeared informant other text
HDMotorSymptmFrstAppInformaOTH
The free-text field related to 'Huntingtons Disease motor symptom first appeared informant type' specifying other text. The type of initial motor symptoms of Huntington disease (HD) described by the informant
Other, specify
  
Alphanumeric
Choose all that apply.
No references available
Adult
Supplemental
3.0
7/14/2013
Aliases for variable name not defined
Medical History of Huntington's Disease
History of Disease/Injury Event
Disease/Injury Related Events
 
4000
Free-Form Entry
       
C14956
Huntingtons Disease motor symptom first appeared informant type
HDMotorSymptmFrstAppInformaTyp
The type of initial motor symptoms of Huntington disease (HD) described by the informant
Indicate first motor symptom(s) as noted by informant
Chorea;Fine motor coordination;Gross motor coordination;Gait disorder;Balance impairment;Dysphagia;Dysarthria;Involuntary vocalization/sounds;Slowness of movement;Tremor;Other symptoms, specify;Unable to remember first symptom;
Chorea;Fine motor coordination;Gross motor coordination;Gait disorder;Balance impairment;Dysphagia;Dysarthria;Involuntary vocalization/sounds;Slowness of movement;Tremor;Other symptoms, specify (i.e., motor symptoms, involuntary movements);Unable to remember first symptom (s);
Alphanumeric
Choose all that apply.
No references available
Adult
Supplemental
3.0
7/14/2013
Aliases for variable name not defined
Medical History of Huntington's Disease
History of Disease/Injury Event
Disease/Injury Related Events
HD informant initial motor symptom type
 
Multiple Pre-Defined Values Selected
       
C17737
Chorea anatomic site informant type
ChoreaAntmicSiteInformantTyp
Anatomic site of the participant's/subject's body affected by chorea as noted by the informant
If Chorea, indicate location
Face;Upper extremities;Lower extremities;Trunk;
Face;Upper extremities;Lower extremities;Trunk;
Alphanumeric
Choose all that apply.
No references available
Adult
Supplemental
3.0
8/30/2013
Aliases for variable name not defined
Medical History of Huntington's Disease
History of Disease/Injury Event
Disease/Injury Related Events
  
Multiple Pre-Defined Values Selected
       
C17738
Informant participant relationship type
InformantPartcpntRelateTyp
The relationship of the informant to participant/subject
Indicate relationship of informant to particiapnt/subject
Family member, specify;Friend;Study Investigator/Study Coordinator;Other, specify:;
Family member, specify;Friend;Study Investigator/Study Coordinator;Other, specify:;
Alphanumeric
No instructions available
No references available
Adult
Supplemental
3.0
8/30/2013
Aliases for variable name not defined
Medical History of Huntington's Disease
History of Disease/Injury Event
Disease/Injury Related Events
  
Single Pre-Defined Value Selected
       
C18991
Huntingtons Disease developing motor symptom other text
HDDevelopingMotorSymptmOTH
The free-text field related to 'Huntingtons Disease developing motor symptom type' specifying other text. Type(s) of motor symptoms of Huntington disease (HD) which developed over the course of Illness
Other, specify
  
Alphanumeric
Choose all that apply. Other, specify. This question should be answered by the physician based on direct observation and with input from the informant and participant/subject (as applicable).
No references available
Adult
Supplemental
3.0
7/14/2013
Aliases for variable name not defined
Medical History of Huntington's Disease
History of Disease/Injury Event
Disease/Injury Related Events
 
4000
Free-Form Entry
       
C14957
Huntingtons Disease developing motor symptom type
HDDevelopingMotorSymptmTyp
Type(s) of motor symptoms of Huntington disease (HD) which developed over the course of Illness
What additional motor symtpoms have developed over the course of the illness as noted by a physician?
Chorea;Fine motor coordination;Gross motor coordination;Gait disorder;Balance impairment;Dysphagia;Dysarthria;Involuntary vocalization/sounds;Slowness of movement;Tremor;Other symptoms, specify;Unable to remember first symptom;
Chorea;Fine motor coordination;Gross motor coordination;Gait disorder;Balance impairment;Dysphagia;Dysarthria;Involuntary vocalization/sounds;Slowness of movement;Tremor;Other symptoms, specify (i.e., motor symptoms, involuntary movements);Unable to remember first symptom (s);
Alphanumeric
Choose all that apply. Other, specify. This question should be answered by the physician based on direct observation and with input from the informant and participant/subject (as applicable).
No references available
Adult
Supplemental
3.0
7/14/2013
Aliases for variable name not defined
Medical History of Huntington's Disease
History of Disease/Injury Event
Disease/Injury Related Events
HD developing motor symptom type
 
Multiple Pre-Defined Values Selected
       
C17740
Chorea anatomic site physician developing type
ChoreaAntmicSitePhysDevelpTyp
Anatomic site of the participant's/subject's body affected by chorea as noted by a physician as a developing issues from disease.
If Chorea, indicate location
Face;Upper extremities;Lower extremities;Trunk;
Face;Upper extremities;Lower extremities;Trunk;
Alphanumeric
Choose all that apply.
No references available
Adult
Supplemental
3.0
8/30/2013
Aliases for variable name not defined
Medical History of Huntington's Disease
History of Disease/Injury Event
Disease/Injury Related Events
  
Multiple Pre-Defined Values Selected
       
C19059
Informant participant relationship other text
InformantPartcpntRelateOTH
The free-text field related to 'Informant participant relationship type' specifying other text. The relationship of the informant to participant/subject
Other, specify
  
Alphanumeric
No instructions available
No references available
Adult
Supplemental
3.0
8/30/2013
Aliases for variable name not defined
Medical History of Huntington's Disease
History of Disease/Injury Event
Disease/Injury Related Events
 
4000
Free-Form Entry
       
C14958
Diagnosis physician indicator
DiagnosPhysicianInd
Has diagnosis been made by a physician?
Has diagnosis been made by a physician?
Yes;No;Unknown;
Yes;No;Unknown;
Alphanumeric
If No or Unknown/Uncertain are answered, skip to question 10 - "Based on the information that is available, how confident is the investigator that this person has manifest Huntington disease?".
No references available
Adult
Supplemental
3.0
7/14/2013
Aliases for variable name not defined
Medical History of Huntington's Disease
History of Disease/Injury Event
Disease/Injury Related Events
Diagnosis by physician indicator
 
Single Pre-Defined Value Selected
       
C14959
Diagnosis physician year date
DiagnosPhysicianYrDate
The year the physician diagnosed the participant/ subject
If Yes, indicate year of physician 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.).
No references available
Adult
Supplemental
3.0
7/14/2013
Aliases for variable name not defined
Medical History of Huntington's Disease
History of Disease/Injury Event
Disease/Injury Related Events
Diagnosis by physician year
 
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.
If Yes, indicate year of physician diagnosis.
  
Alphanumeric
Check box for Unknown
No references available
Adult;Pediatric
Supplemental
3.0
7/17/2013
Aliases for variable name not defined
Medical History of Huntington's Disease
History of Disease/Injury Event
Disease/Injury Related Events
 
20
Free-Form Entry
       
C19060
Physician specialty other text
PhysicianSpecialtyOTH
The free-text field related to 'Physician specialty type' specifying other text. The specialty of the physician who made the diagnosis
Other, specify
  
Alphanumeric
No instructions available
No references available
Adult
Supplemental
3.0
8/30/2013
Aliases for variable name not defined
Medical History of Huntington's Disease
History of Disease/Injury Event
Disease/Injury Related Events
 
4000
Free-Form Entry
       
C17742
Physician specialty type
PhysicianSpecialtyTyp
The specialty of the physician who made the diagnosis
If Yes, indicate specialty of the physician who made the initial diagnosis.
Neurologist;Psychiatrist;Primary Care Physician;Other, specify;
Neurologist;Psychiatrist;Primary Care Physician;Other, specify;
Alphanumeric
No instructions available
No references available
Adult
Supplemental
3.0
8/30/2013
Aliases for variable name not defined
Medical History of Huntington's Disease
History of Disease/Injury Event
Disease/Injury Related Events
  
Single Pre-Defined Value Selected
       
C10506
Genetic diagnosis established indicator
GeneticDiagnosEstablishedInd
Whether a genetic diagnosis for the disease/disorder was established
Was diagnosis based on genetic testing?
Yes;No;Unknown;
Yes;No;Unknown;
Alphanumeric
If Yes or Unknown are selected, then skip to question 10 - "Based on the information that is available, how confident is the investigator that this person has manifest Huntington disease?"
No references available
Adult;Pediatric
Supplemental
3.0
7/14/2013
Aliases for variable name not defined
Medical History of Huntington's Disease
History of Disease/Injury Event
Disease/Injury Related Events
Genetic diagnosis established indicator
 
Single Pre-Defined Value Selected
       
C14960
Diagnosis based abnormality type
DiagnosBasedAbnrmlyTyp
What kind of abnormalities was the diagnosis based on?
If No, what kind of abnormalitites was the diagnosis based on?
Motor;Behavioral;Cognitive;Functional;Unknown;
Motor;Behavioral;Cognitive;Functional;Unknown;
Alphanumeric
Check all that apply
No references available
Adult
Supplemental
3.0
7/14/2013
Aliases for variable name not defined
Medical History of Huntington's Disease
History of Disease/Injury Event
Disease/Injury Related Events
Diagnosis based abnormalities type
 
Multiple Pre-Defined Values Selected
       
C14941
Diagnosis certainty percentage range type
DiagnosCertaintyPercenRangeTyp
Option for the range of the clinician's certainty of the medical diagnosis of the disease or disorder
Based on the information that ia available, how confident is the investigator that this person has manifest Huntington disease?
Less than 25%;Between 26-50%;Between 51-75%;Between 76-90%;Greater than 90%;
Less than 25%;Between 26-50%;Between 51-75%;Between 76-90%;Greater than 90%;
Alphanumeric
No additional instructions
No references available
Adult
Supplemental
3.0
7/14/2013
Aliases for variable name not defined
Medical History of Huntington's Disease
History of Disease/Injury Event
Disease/Injury Related Events
Diagnosis certainty percentage range II
 
Single Pre-Defined Value Selected
       
03-22-2017
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