CDE Detailed Report
Disease: Huntington's Disease
Subdomain Name: History of Disease/Injury Event
CRF: Medical History of Huntington's Disease
Displaying 1 - 28 of 28
Subdomain Name: History of Disease/Injury Event
CRF: Medical History of Huntington's Disease
Displaying 1 - 28 of 28
| CDE ID | CDE Name | Variable Name | Definition | Short Description | Question Text | Permissible Values | Description | Data Type | Disease Specific Instructions | Disease Specific Reference | Population | Classification (e.g., Core) | Version Number | Version Date | CRF Name (CRF Module / Guidance) | Subdomain Name | Domain Name | Size | Input Restrictions | Min Value | Max Value | Measurement Type | External Id Loinc | External Id Snomed | External Id caDSR | External Id CDISC |
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| C10506 | Genetic diagnosis established indicator | GeneticDiagnosEstablishedInd | Whether a genetic diagnosis for the disease/disorder was established | 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 | 3.00 | 2013-07-14 03:55:23.71 | Medical History of Huntington's Disease | History of Disease/Injury Event | Disease/Injury Related Events |
Single Pre-Defined Value Selected |
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| C14960 | Diagnosis based abnormality type | DiagnosBasedAbnrmlyTyp | What kind of abnormalities was the diagnosis based on? | 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 | 3.00 | 2013-07-14 19:48:50.273 | Medical History of Huntington's Disease | History of Disease/Injury Event | Disease/Injury Related Events |
Multiple Pre-Defined Values Selected |
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| C18153 | Data unknown text | DataUnknwnTxt | The free-text field to Mark an "X" in to record if data are unknown or not available | The free-text field to Mark an "X" in to record if data are unknown or not availabl | If Yes, indicate year of physician diagnosis. | Alphanumeric |
Check box for Unknown |
No references available | Adult;Pediatric | Supplemental | 3.00 | 2013-07-17 09:26:36.973 | Medical History of Huntington's Disease | History of Disease/Injury Event | Disease/Injury Related Events | 20 |
Free-Form Entry |
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| 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 | 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 | 3.00 | 2013-07-14 19:48:50.273 | Medical History of Huntington's Disease | History of Disease/Injury Event | Disease/Injury Related Events |
Single Pre-Defined Value Selected |
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| C17733 | Person completing form name | PrsnCompletingFormName | Name of person completing the form | Name of person completing the form | Name of person completing the form | Alphanumeric | No references available | Adult | Supplemental | 3.00 | 2013-08-30 17:06:52.8 | Medical History of Huntington's Disease | History of Disease/Injury Event | Disease/Injury Related Events | 255 |
Free-Form Entry |
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| 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 | 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 | 3.00 | 2013-07-14 19:48:50.273 | Medical History of Huntington's Disease | History of Disease/Injury Event | Disease/Injury Related Events | 4000 |
Free-Form Entry |
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| C14951 | Motor symptom first appeared self report date and time | MotrSympFrstApSelfRprtDateTime | Date of the first motor symptom(s) as noted by the participant/subject | 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 | 3.00 | 2013-07-14 19:48:50.273 | Medical History of Huntington's Disease | History of Disease/Injury Event | Disease/Injury Related Events |
Free-Form Entry |
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| 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 | Title/Credentials/Training of the person completing the form | Alphanumeric | No references available | Adult | Supplemental | 3.00 | 2013-08-30 17:06:52.8 | Medical History of Huntington's Disease | History of Disease/Injury Event | Disease/Injury Related Events | 255 |
Free-Form Entry |
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| 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 | 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 | 3.00 | 2013-07-14 19:48:50.273 | Medical History of Huntington's Disease | History of Disease/Injury Event | Disease/Injury Related Events | 4000 |
Free-Form Entry |
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| C14952 | Huntingtons Disease motor symptom first appeared self report type | HDMotorSymptmFrstAppSelfRepTyp | The type of first motor symptoms described by the participant/subject | 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 | 3.00 | 2013-07-14 19:48:50.273 | Medical History of Huntington's Disease | History of Disease/Injury Event | Disease/Injury Related Events |
Multiple Pre-Defined Values Selected |
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| C17735 | Motor symptom first appeared self report status | MotorSymptmFrstSelfReprtStatus | The status of the first motor symptom(s) as noted by the participant/subject | 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 | 3.00 | 2013-08-30 17:06:52.8 | Medical History of Huntington's Disease | History of Disease/Injury Event | Disease/Injury Related Events |
Single Pre-Defined Value Selected |
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| 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 | 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 | 3.00 | 2013-07-14 19:48:50.273 | Medical History of Huntington's Disease | History of Disease/Injury Event | Disease/Injury Related Events | 4000 |
Free-Form Entry |
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| C14953 | Chorea anatomic site | ChoreaAntmicSite | Anatomic site of the participant's/subject's body affected by chorea | 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 | 3.00 | 2013-07-14 19:48:50.273 | Medical History of Huntington's Disease | History of Disease/Injury Event | Disease/Injury Related Events |
Multiple Pre-Defined Values Selected |
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| C17736 | Symptoms first appeared informant status | MotorSymptmFrstApInformantStat | The status whether the first motor symptom(s) were noted by the person completing the form | The status whether the first motor symptom(s) were noted by the person completing the for | Date of first motor symtpom(s) as noted by informant | Not applicable | Not applicable | Alphanumeric |
Skip to question 6 |
No references available | Adult | Supplemental | 3.00 | 2013-08-30 17:06:52.8 | Medical History of Huntington's Disease | History of Disease/Injury Event | Disease/Injury Related Events |
Single Pre-Defined Value Selected |
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| 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 | 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 references available | Adult | Supplemental | 3.00 | 2013-08-30 17:06:52.8 | Medical History of Huntington's Disease | History of Disease/Injury Event | Disease/Injury Related Events | 4000 |
Free-Form Entry |
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| C14954 | Motor symptom improvement since diagnosis indicator | MotorSymptmImprvmntSncDiagInd | the indicator whether motor symptoms have improved since the first diagnosis | the indicator whether motor symptoms have improved since the first diagnosi | Have motor symptoms improved since first diagnosis? | Yes;No | Yes;No | Alphanumeric |
No additional instructions |
No references available | Adult | Supplemental | 3.00 | 2013-07-14 19:48:50.273 | Medical History of Huntington's Disease | History of Disease/Injury Event | Disease/Injury Related Events |
Single Pre-Defined Value Selected |
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| C17737 | Chorea anatomic site informant type | ChoreaAntmicSiteInformantTyp | Anatomic site of the participant's/subject's body affected by chorea as noted by the informant | 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 | 3.00 | 2013-08-30 17:06:52.8 | Medical History of Huntington's Disease | History of Disease/Injury Event | Disease/Injury Related Events |
Multiple Pre-Defined Values Selected |
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| 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 | 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 references available | Adult | Supplemental | 3.00 | 2013-08-30 17:06:52.8 | Medical History of Huntington's Disease | History of Disease/Injury Event | Disease/Injury Related Events | 4000 |
Free-Form Entry |
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| C14955 | Motor symptom first appeared informant date | MotorSymptmFrstAppInformanDate | Date the first motor symptom(s) were noted by the person completing the form | Date the first motor symptom(s) were noted by the person completing the for | 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 | 3.00 | 2013-07-14 19:48:50.273 | Medical History of Huntington's Disease | History of Disease/Injury Event | Disease/Injury Related Events |
Free-Form Entry |
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| C17738 | Informant participant relationship type | InformantPartcpntRelateTyp | The relationship of the informant to participant/subject | 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 references available | Adult | Supplemental | 3.00 | 2013-08-30 17:06:52.8 | Medical History of Huntington's Disease | History of Disease/Injury Event | Disease/Injury Related Events |
Single Pre-Defined Value Selected |
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| C14956 | Huntingtons Disease motor symptom first appeared informant type | HDMotorSymptmFrstAppInformaTyp | The type of initial motor symptoms of Huntington disease (HD) described by the informant | 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 | 3.00 | 2013-07-14 19:48:50.273 | Medical History of Huntington's Disease | History of Disease/Injury Event | Disease/Injury Related Events |
Multiple Pre-Defined Values Selected |
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| C17739 | Informant participant family member relationship text | InformtPartcpntFamMembReltTxt | The free-text field to specify the relationship of the informant to a family member of the participant/subject | The free-text field to specify the relationship of the informant to a family member of the participant/subjec | Family member, specify | Alphanumeric | No references available | Adult | Supplemental | 3.00 | 2013-08-30 17:06:52.8 | Medical History of Huntington's Disease | History of Disease/Injury Event | Disease/Injury Related Events | 255 |
Free-Form Entry |
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| C14957 | Huntingtons Disease developing motor symptom type | HDDevelopingMotorSymptmTyp | Type(s) of motor symptoms of Huntington disease (HD) which developed over the course of Illness | Type(s) of motor symptoms of Huntington disease 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 | 3.00 | 2013-07-14 19:48:50.273 | Medical History of Huntington's Disease | History of Disease/Injury Event | Disease/Injury Related Events |
Multiple Pre-Defined Values Selected |
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| 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 | Anatomic site of the participant's/subject's body affected by chorea as noted by a physician as a developing issues from diseas | 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 | 3.00 | 2013-08-30 17:06:52.8 | Medical History of Huntington's Disease | History of Disease/Injury Event | Disease/Injury Related Events |
Multiple Pre-Defined Values Selected |
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| C14958 | Diagnosis physician indicator | DiagnosPhysicianInd | Has diagnosis been made by a physician? | 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 | 3.00 | 2013-07-14 19:48:50.273 | Medical History of Huntington's Disease | History of Disease/Injury Event | Disease/Injury Related Events |
Single Pre-Defined Value Selected |
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| C17742 | Physician specialty type | PhysicianSpecialtyTyp | The specialty of the physician who made the diagnosis | 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 references available | Adult | Supplemental | 3.00 | 2013-08-30 17:06:52.8 | Medical History of Huntington's Disease | History of Disease/Injury Event | Disease/Injury Related Events |
Single Pre-Defined Value Selected |
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| C14959 | Diagnosis physician year date | DiagnosPhysicianYrDate | The year the physician diagnosed the participant/ subject | 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 | 3.00 | 2013-07-14 19:48:50.273 | Medical History of Huntington's Disease | History of Disease/Injury Event | Disease/Injury Related Events |
Free-Form Entry |
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| C17743 | Physician confidence level basis type | PhysicianConfidenceLvlBasisTyp | What the physician confidence level is primarily based on | What the physician confidence level is primarily based on | Is physician confidence level primarily based on | History;Examination;Genetic Testing | History;Examination;Genetic Testing | Alphanumeric |
Choose all that apply |
No references available | Adult | Supplemental | 3.00 | 2013-08-30 17:06:52.8 | Medical History of Huntington's Disease | History of Disease/Injury Event | Disease/Injury Related Events |
Multiple Pre-Defined Values Selected |
