CDE Detailed Report
Disease: Amyotrophic Lateral Sclerosis
Sub-Domain: Functional Outcomes
CRF: ALS Swallowing Severity Scale (ALSSS)
Displaying 1 - 7 of 7
Sub-Domain: Functional Outcomes
CRF: ALS Swallowing Severity Scale (ALSSS)
Displaying 1 - 7 of 7
| 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 / 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 |
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| C11968 | ALS Severity Score (ALSSS) - swallow score | ALSSSSwllwScore | Score for the participant's swallowing function based on his or her ability to swallow, as part of the ALS Severity Score of Hillel et al. (ALSSS) | Score for the participant's swallowing function based on his or her ability to swallow, as part of the ALS Severity Score of Hillel et al. (ALSSS) | Swallowing | 10;9;8;7;6;5;4;3;2;1 | Normal eating habits - normal swallowing;Normal eating habits - nominal abnormality;Early eating problems - minor swallowing problems;Early eating problems - prolonged time or smaller bite size;Dietary consistency changes - soft diet;Dietary consistency changes - liquefied diet;Needs tube feeding - supplemental tube feedings;Needs tube feeding - tube feeding with occasional oral nutrition;No oral feeding - secretions managed with aspirator and/or medications;No oral feeding - aspiration of secretions | Numeric Values |
Refer to instructions on form. |
Hillel AD ,Miller RM, et al. Amyotrophic Lateral Sclerosis Severity Scale. Neuroepidemiology. 1989; 8: 142-150. | Adult | Supplemental | 3.00 | 2013-07-22 16:57:17.79 | ALS Swallowing Severity Scale (ALSSS) | Functional Outcomes | Outcomes and End Points |
Single Pre-Defined Value Selected |
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| C11969 | ALS Severity Score (ALSSS) - lower extremity walk score | ALSSSLowExtrmtyWlkScore | Score for the participant's lower extremity function based on his or her ability to walk and move the legs, as part of the ALS Severity Score of Hillel et al. (ALSSS) | Score for the participant's lower extremity function based on his or her ability to walk and move the legs, as part of the ALS Severity Score of Hillel et al. (ALSSS) | Lower extremity and walking | 10;9;8;7;6;5;4;3;2;1 | Normal - normal ambulation;Normal - fatigue suspected;Early ambulation difficulties - difficulty with uneven terrain;Early ambulation difficulties - observed changes in gait;Walks with assistance - walks with mechanical device;Walks with assistance - walks with mechanical device and assistant;Functional movement only - able to support weight;Functional movement only - purposeful leg movements;No purposeful leg movements - minimal movement;No purposeful leg movements - paralysis | Numeric Values |
Refer to instructions on form. |
Hillel AD ,Miller RM, et al. Amyotrophic Lateral Sclerosis Severity Scale. Neuroepidemiology. 1989; 8: 142-150. | Adult | Supplemental | 3.00 | 2013-07-22 16:57:17.79 | ALS Swallowing Severity Scale (ALSSS) | Functional Outcomes | Outcomes and End Points |
Single Pre-Defined Value Selected |
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| C11970 | ALS Severity Score (ALSSS) - upper extremity dress hygiene score | ALSSSUpprExtrmtyDrssHygneScore | Score for the participant's upper extremity function based on his or her ability to dress and to maintain hygiene, as part of the ALS Severity Score of Hillel et al. (ALSSS) | Score for the participant's upper extremity function based on his or her ability to dress and to maintain hygiene, as part of the ALS Severity Score of Hillel et al. (ALSSS) | Upper extremity dressing and hygiene | 10;9;8;7;6;5;4;3;2;1 | Normal function - normal;Normal function - suspected fatigue;Independence and complete self care - slow self;Independence and complete self care - effortful self-care performance;Intermittent assistance - mostly independent;Intermittent assistance - partial independence;Needs attendant for self-care - attendant assists patient;Needs attendant for self-care - patient assists attendant;Total dependence - minimal movement;Total dependence - paralysis | Numeric Values |
Refer to instructions on form. |
Hillel AD ,Miller RM, et al. Amyotrophic Lateral Sclerosis Severity Scale. Neuroepidemiology. 1989; 8: 142-150. | Adult | Supplemental | 3.00 | 2013-07-22 16:57:17.79 | ALS Swallowing Severity Scale (ALSSS) | Functional Outcomes | Outcomes and End Points |
Single Pre-Defined Value Selected |
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| C11971 | ALS Severity Score (ALSSS) - bulbar score value | ALSSSBulbrScoreVal | Value of the sum of the speech subscore and swallowing subscore, as part of the ALS Severity Score of Hillel et al. (ALSSS) | Value of the sum of the speech subscore and swallowing subscore, as part of the ALS Severity Score of Hillel et al. (ALSSS) | Bulbar Score | Numeric Values |
bulbar score = (speech subscore) + (swallowing subscore) |
Hillel AD ,Miller RM, et al. Amyotrophic Lateral Sclerosis Severity Scale. Neuroepidemiology. 1989; 8: 142-150. | Adult | Supplemental | 3.00 | 2013-07-22 16:57:17.79 | ALS Swallowing Severity Scale (ALSSS) | Functional Outcomes | Outcomes and End Points |
Free-Form Entry |
2 | 20 | ||||||||
| C11972 | ALS Severity Score (ALSSS) - spinal score value | ALSSSSpnalScoreVal | Value of the sum of lower extremity subscore and upper extremity subscore, as part of the ALS Severity Score of Hillel et al. (ALSSS) | Value of the sum of the lower extremity subscore and the upper extremity, as part of the ALS Severity Score of Hillel et al. (ALSSS) | Spinal Score | Numeric Values |
spinal score = (lower extremity subscore) + (upper extremity subscore) |
Hillel AD ,Miller RM, et al. Amyotrophic Lateral Sclerosis Severity Scale. Neuroepidemiology. 1989; 8: 142-150. | Adult | Supplemental | 3.00 | 2013-07-22 16:57:17.79 | ALS Swallowing Severity Scale (ALSSS) | Functional Outcomes | Outcomes and End Points |
Free-Form Entry |
2 | 20 | ||||||||
| C11973 | ALS Severity Score (ALSSS) - total score value | ALSSSTotlScoreVal | Value of the total score, as part of the ALS Severity Score of Hillel et al. (ALSSS) | Value of the total score, as part of the ALS Severity Score of Hillel et al. (ALSSS) | Interpretation | Numeric Values |
Refer to instructions on form. |
Hillel AD ,Miller RM, et al. Amyotrophic Lateral Sclerosis Severity Scale. Neuroepidemiology. 1989; 8: 142-150. | Adult | Supplemental | 3.00 | 2013-07-22 16:57:17.79 | ALS Swallowing Severity Scale (ALSSS) | Functional Outcomes | Outcomes and End Points |
Free-Form Entry |
4 | 40 | ||||||||
| C11967 | ALS Severity Score (ALSSS) - speech score | ALSSSSpchScore | Score for the participant's speech based on his or her ability to speak, as part of the ALS Severity Score of Hillel et al. (ALSSS) | Score for the participant's speech based on his or her ability to speak, as part of the ALS Severity Score of Hillel et al. (ALSSS) | Speech | 10;9;8;7;6;5;4;3;2;1;X | Normal speech processes - normal;Normal speech processes - nominal abnormalities;Detectable speech disturbance - perceived speech changes;Detectable speech disturbance - obvious speech abnormalities;Intelligible with repeating - repeats message on occasion;Intelligible with repeating - frequent repeating required;Speech combined with nonverbal communication - speech plus nonverbal communication;Speech combined with nonverbal communication - limits speech to one word response;Loss of useful speech - vocalizes for emotional expression;Loss of useful speech - nonvocal;Loss of useful speech -tracheostomy | Alphanumeric |
Refer to instructions on form. |
Hillel AD ,Miller RM, et al. Amyotrophic Lateral Sclerosis Severity Scale. Neuroepidemiology. 1989; 8: 142-150. | Adult | Supplemental | 3.00 | 2013-07-22 16:57:17.79 | ALS Swallowing Severity Scale (ALSSS) | Functional Outcomes | Outcomes and End Points |
Single Pre-Defined Value Selected |
