CDE Detailed Report

Disease: Amyotrophic Lateral Sclerosis
Sub-Domain: Functional Outcomes
CRF: ALS Swallowing Severity Scale (ALSSS)

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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
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

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

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

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

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

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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

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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
CSV