CDE Detailed Report
Disease: Myasthenia Gravis
Sub-Domain: Global Outcome
CRF: Myasthenia Gravis Composite - MGC
Displaying 1 - 11 of 11
Sub-Domain: Global Outcome
CRF: Myasthenia Gravis Composite - MGC
Displaying 1 - 11 of 11
| CDE ID | CDE Name | Variable Name | Definition | Short Description | Additional Notes (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 / Guideline) | Sub Domain Name | Domain Name | Size | Input Restrictions | Min Value | Max Value | Measurement Type | External Id Loinc | External Id Snomed | External Id caDSR | External Id CDISC |
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| C16606 | Myasthenia Gravis Composite (MGC) - breath difficult score | MGCBreathDifficultScore | Score for difficulty breathing, as part of the Myasthenia Gravis Composite (MGC) | Score for difficulty breathing, as part of the Myasthenia Gravis Composite (MGC) | Breathing | 0;2;4;9 | 0 = Normal;2 = Shortness of breath with exertion;4 = Shortness of breath at rest;9 = Ventilator dependence | Numeric Values |
Thought to be caused by MG |
Burns TM, Conaway MR, Cutter GR, Sanders DB The construction of an efficient evaluative instrument for myasthenia gravis: the MG Composite. Muscle and Nerve;2008;38:1553-1562. Burns TM. History of outcome measures in myasthenia gravis. Muscle Nerve 2010;42:5-13. Burns TM, Conaway MR, Sanders DB and the MG Composite and MG-QOL15 Study Group. The MG Composite: A valid and reliable outcome measure for myasthenia gravis. Neurology 2010; 74:1434-1440. | Adult | Core | 3.00 | 2013-07-24 21:00:23.88 | Myasthenia Gravis Composite - MGC | Global Outcome | Outcomes and End Points |
Single Pre-Defined Value Selected |
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| C16607 | Myasthenia Gravis Composite (MGC) - neck flex extend weak score | MGCNeckFlexExtendWeakScore | Score for weakest neck flexion or extension, as part of the Myasthenia Gravis Composite (MGC) | Score for weakest neck flexion or extension, as part of the Myasthenia Gravis Composite (MGC) | Neck flexion or extension, weakest | 0;1;3;4 | 0 = Normal;1 = Mild weakness;3 = Moderate weakness;4 = Severe weakness | Numeric Values |
Physical examination "Moderate weakness" should be construed as weakness that equals roughly 50% +/- 15% of expected normal strength. Any weakness milder than that would be "mild" and any weakness more severe than that would be classified as "severe". |
Burns TM, Conaway MR, Cutter GR, Sanders DB The construction of an efficient evaluative instrument for myasthenia gravis: the MG Composite. Muscle and Nerve;2008;38:1553-1562. Burns TM. History of outcome measures in myasthenia gravis. Muscle Nerve 2010;42:5-13. Burns TM, Conaway MR, Sanders DB and the MG Composite and MG-QOL15 Study Group. The MG Composite: A valid and reliable outcome measure for myasthenia gravis. Neurology 2010; 74:1434-1440. | Adult | Core | 3.00 | 2013-07-24 21:00:23.88 | Myasthenia Gravis Composite - MGC | Global Outcome | Outcomes and End Points |
Single Pre-Defined Value Selected |
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| C16608 | Myasthenia Gravis Composite (MGC) - shoulder abduct weak score | MGCShoulderAbductWeakScore | Score for weakness in shoulder abduction, as part of the Myasthenia Gravis Composite (MGC) | Score for weakness in shoulder abduction, as part of the Myasthenia Gravis Composite (MGC) | Shoulder abduction | 0;2;4;5 | 0 = Normal;2 = Mild weakness;4 = Moderate weakness;5 = Severe weakness | Numeric Values |
Physical examination "Moderate weakness" should be construed as weakness that equals roughly 50% +/- 15% of expected normal strength. Any weakness milder than that would be "mild" and any weakness more severe than that would be classified as "severe". |
Burns TM, Conaway MR, Cutter GR, Sanders DB The construction of an efficient evaluative instrument for myasthenia gravis: the MG Composite. Muscle and Nerve;2008;38:1553-1562. Burns TM. History of outcome measures in myasthenia gravis. Muscle Nerve 2010;42:5-13. Burns TM, Conaway MR, Sanders DB and the MG Composite and MG-QOL15 Study Group. The MG Composite: A valid and reliable outcome measure for myasthenia gravis. Neurology 2010; 74:1434-1440. | Adult | Core | 3.00 | 2013-07-24 21:00:23.88 | Myasthenia Gravis Composite - MGC | Global Outcome | Outcomes and End Points |
Single Pre-Defined Value Selected |
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| C16609 | Myasthenia Gravis Composite (MGC) - hip flex weak score | MGCHipFlexWeakScore | Score for weakness in hip flexion, as part of the Myasthenia Gravis Composite (MGC) | Score for weakness in hip flexion, as part of the Myasthenia Gravis Composite (MGC) | Hip flexion | 0;2;4;5 | 0 = Normal;2 = Mild weakness;4 = Moderate weakness;5 = Severe weakness | Numeric Values |
Physical examination "Moderate weakness" should be construed as weakness that equals roughly 50% +/- 15% of expected normal strength. Any weakness milder than that would be "mild" and any weakness more severe than that would be classified as "severe". |
Burns TM, Conaway MR, Cutter GR, Sanders DB The construction of an efficient evaluative instrument for myasthenia gravis: the MG Composite. Muscle and Nerve;2008;38:1553-1562. Burns TM. History of outcome measures in myasthenia gravis. Muscle Nerve 2010;42:5-13. Burns TM, Conaway MR, Sanders DB and the MG Composite and MG-QOL15 Study Group. The MG Composite: A valid and reliable outcome measure for myasthenia gravis. Neurology 2010; 74:1434-1440. | Adult | Core | 3.00 | 2013-07-24 21:00:23.88 | Myasthenia Gravis Composite - MGC | Global Outcome | Outcomes and End Points |
Single Pre-Defined Value Selected |
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| C16610 | Myasthenia Gravis Composite (MGC) - total score value | MGCTotalScoreVal | Value of the sum of all scores recorded, as part of the Myasthenia Gravis Composite (MGC) | Value of the sum of all scores recorded, as part of the Myasthenia Gravis Composite (MGC) | Total score | Numeric Values |
Sum of Q1 through Q10. |
Burns TM, Conaway MR, Cutter GR, Sanders DB The construction of an efficient evaluative instrument for myasthenia gravis: the MG Composite. Muscle and Nerve;2008;38:1553-1562. Burns TM. History of outcome measures in myasthenia gravis. Muscle Nerve 2010;42:5-13. Burns TM, Conaway MR, Sanders DB and the MG Composite and MG-QOL15 Study Group. The MG Composite: A valid and reliable outcome measure for myasthenia gravis. Neurology 2010; 74:1434-1440. | Adult | Core | 3.00 | 2013-07-24 21:00:23.88 | Myasthenia Gravis Composite - MGC | Global Outcome | Outcomes and End Points |
Free-Form Entry |
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| C16600 | Myasthenia Gravis Composite (MGC) - ptosis up gaze duration score | MGCPtosisUpGazeDuratnScore | Score for duration of delay before ptosis in upward gaze, as part of the Myasthenia Gravis Composite (MGC) | Score for duration of delay before ptosis in upward gaze, as part of the Myasthenia Gravis Composite (MGC) | Ptosis, upward gaze | 0;1;2;3 | 0 = > 45 seconds;1 = 11 - 45 seconds;2 = 1 - 10 seconds;3 = Immediate | Numeric Values |
Physician examination |
Burns TM, Conaway MR, Cutter GR, Sanders DB The construction of an efficient evaluative instrument for myasthenia gravis: the MG Composite. Muscle and Nerve;2008;38:1553-1562. Burns TM. History of outcome measures in myasthenia gravis. Muscle Nerve 2010;42:5-13. Burns TM, Conaway MR, Sanders DB and the MG Composite and MG-QOL15 Study Group. The MG Composite: A valid and reliable outcome measure for myasthenia gravis. Neurology 2010; 74:1434-1440. | Adult | Core | 3.00 | 2013-07-24 21:00:23.88 | Myasthenia Gravis Composite - MGC | Global Outcome | Outcomes and End Points |
Single Pre-Defined Value Selected |
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| C16601 | Myasthenia Gravis Composite (MGC) - double vision lateral gaze duration score | MGCDblVisnLaterlGzeLftRtDurScr | Score for duration of delay before double vision on lateral gaze left or right, as part of the Myasthenia Gravis Composite (MGC) | Score for duration of delay before double vision on lateral gaze left or right, as part of the Myasthenia Gravis Composite (MGC) | Double vision on lateral gaze, left or right | 0;1;3;4 | 0 = > 45 seconds;1 = 11 - 45 seconds;3 = 1 - 10 seconds;4 = Immediate | Numeric Values |
Physician examination |
Burns TM, Conaway MR, Cutter GR, Sanders DB The construction of an efficient evaluative instrument for myasthenia gravis: the MG Composite. Muscle and Nerve;2008;38:1553-1562. Burns TM. History of outcome measures in myasthenia gravis. Muscle Nerve 2010;42:5-13. Burns TM, Conaway MR, Sanders DB and the MG Composite and MG-QOL15 Study Group. The MG Composite: A valid and reliable outcome measure for myasthenia gravis. Neurology 2010; 74:1434-1440. | Adult | Core | 3.00 | 2013-07-24 21:00:23.88 | Myasthenia Gravis Composite - MGC | Global Outcome | Outcomes and End Points |
Single Pre-Defined Value Selected |
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| C16602 | Myasthenia Gravis Composite (MGC) - eye close weak score | MGCEyeCloseWeakScore | Score for weakness of eye closure, as part of the Myasthenia Gravis Composite (MGC) | Score for weakness of eye closure, as part of the Myasthenia Gravis Composite (MGC) | Eye closure | 0;0;1;2 | 0 = Normal;0 = Mild weakness (can be forced open with effort);1 = Moderate weakness (can be forced open easily);2 = Severe weakness (unable to keep eyes closed) | Numeric Values |
Physician examination |
Burns TM, Conaway MR, Cutter GR, Sanders DB The construction of an efficient evaluative instrument for myasthenia gravis: the MG Composite. Muscle and Nerve;2008;38:1553-1562. Burns TM. History of outcome measures in myasthenia gravis. Muscle Nerve 2010;42:5-13. Burns TM, Conaway MR, Sanders DB and the MG Composite and MG-QOL15 Study Group. The MG Composite: A valid and reliable outcome measure for myasthenia gravis. Neurology 2010; 74:1434-1440. | Adult | Core | 3.00 | 2013-07-24 21:00:23.88 | Myasthenia Gravis Composite - MGC | Global Outcome | Outcomes and End Points |
Single Pre-Defined Value Selected |
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| C16603 | Myasthenia Gravis Composite (MGC) - talk clear score | MGCTalkClearScore | Score for clarity of talking, as part of the Myasthenia Gravis Composite (MGC) | Score for clarity of talking, as part of the Myasthenia Gravis Composite (MGC) | Talking | 0;2;4;6 | 0 = Normal;2 = Intermittent slurring or nasal speech;4 = Constant slurring or nasal but can be understood;6 = Difficult to understand speech | Numeric Values |
Patient history |
Burns TM, Conaway MR, Cutter GR, Sanders DB The construction of an efficient evaluative instrument for myasthenia gravis: the MG Composite. Muscle and Nerve;2008;38:1553-1562. Burns TM. History of outcome measures in myasthenia gravis. Muscle Nerve 2010;42:5-13. Burns TM, Conaway MR, Sanders DB and the MG Composite and MG-QOL15 Study Group. The MG Composite: A valid and reliable outcome measure for myasthenia gravis. Neurology 2010; 74:1434-1440. | Adult | Core | 3.00 | 2013-07-24 21:00:23.88 | Myasthenia Gravis Composite - MGC | Global Outcome | Outcomes and End Points |
Single Pre-Defined Value Selected |
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| C16604 | Myasthenia Gravis Composite (MGC) - chew fatigue score | MGCChewFatigueScore | Score for chewing fatigue, as part of the Myasthenia Gravis Composite (MGC) | Score for chewing fatigue, as part of the Myasthenia Gravis Composite (MGC) | Chewing | 0;2;4;6 | 0 = Normal;2 = Fatigue with solid food;4 = Fatigue with soft food;6 = Gastric tube | Numeric Values |
Patient history |
Burns TM, Conaway MR, Cutter GR, Sanders DB The construction of an efficient evaluative instrument for myasthenia gravis: the MG Composite. Muscle and Nerve;2008;38:1553-1562. Burns TM. History of outcome measures in myasthenia gravis. Muscle Nerve 2010;42:5-13. Burns TM, Conaway MR, Sanders DB and the MG Composite and MG-QOL15 Study Group. The MG Composite: A valid and reliable outcome measure for myasthenia gravis. Neurology 2010; 74:1434-1440. | Adult | Core | 3.00 | 2013-07-24 21:00:23.88 | Myasthenia Gravis Composite - MGC | Global Outcome | Outcomes and End Points |
Single Pre-Defined Value Selected |
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| C16605 | Myasthenia Gravis Composite (MGC) - swallow difficult score | MGCSwallowDifficultScore | Score for difficulty swallowing, as part of the Myasthenia Gravis Composite (MGC) | Score for difficulty swallowing, as part of the Myasthenia Gravis Composite (MGC) | Swallowing | 0;2;5;6 | 0 = Normal;2 = Rare episode of choking or trouble swallowing;5 = Frequent trouble swallowing, e.g. necessitating changes in diet;6 = Gastric tube | Numeric Values |
Patient history |
Burns TM, Conaway MR, Cutter GR, Sanders DB The construction of an efficient evaluative instrument for myasthenia gravis: the MG Composite. Muscle and Nerve;2008;38:1553-1562. Burns TM. History of outcome measures in myasthenia gravis. Muscle Nerve 2010;42:5-13. Burns TM, Conaway MR, Sanders DB and the MG Composite and MG-QOL15 Study Group. The MG Composite: A valid and reliable outcome measure for myasthenia gravis. Neurology 2010; 74:1434-1440. | Adult | Core | 3.00 | 2013-07-24 21:00:23.88 | Myasthenia Gravis Composite - MGC | Global Outcome | Outcomes and End Points |
Single Pre-Defined Value Selected |
