CDE Detailed Report

Disease: Amyotrophic Lateral Sclerosis
Sub-Domain: Quality of Life/Patient Reported Outcomes
CRF: Quality of Life in Swallowing Disorders (SWAL-QOL)

Displaying 51 - 66 of 66
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
C10289 Quality of Life in Swallowing Disorders (SWAL-QOL) - excess saliva phlegm problem indicator SWALQOLExcsSalvPhlgmProbInd Scale assessing how true the following statement has been for the participant during the last month: Having excess saliva or phlegm. As part of Quality of Life in Swallowing Disorders (SWAL-QOL). Indicates how often subject experiences having excess saliva or phlegm, as part of the Quality of Life in Swallowing Disorders (SWAL-QOL) Having excess saliva or phlegm 1;2;3;4;5 Almost always;Often;Sometimes;Hardly ever;Never Numeric Values

Circle one number on each line

Colleen A. McHorney, PhD, US Outcomes Research, Merck & Co., Inc., 351 North Sumneytown Pike, UG2MW-05, North Wales, PA 19454 Adult Supplemental 3.00 2013-07-22 16:57:17.79 Quality of Life in Swallowing Disorders (SWAL-QOL) Quality of Life/Patient Reported Outcomes Outcomes and End Points

Single Pre-Defined Value Selected

C10321 Quality of Life in Swallowing Disorders (SWAL-QOL) - consistency liquid indicator SWALQOLConsstncyLiqInd Category of consistency or texture of the liquids participant has been drinking most often in the last week. As part of Quality of Life in Swallowing Disorders (SWAL-QOL). Indicates consistency of the liquid subject has been drinking in the last week, as part of the Quality of Life in Swallowing Disorders (SWAL-QOL) Please circle the letter of the one description below that best describes the consistency of liquids you have been drinking most often in the last week. A;B;C;D;E A;B;C;D;E Alphanumeric

Choose only one

Colleen A. McHorney, PhD, US Outcomes Research, Merck & Co., Inc., 351 North Sumneytown Pike, UG2MW-05, North Wales, PA 19500 Adult Supplemental 3.00 2013-07-22 16:57:17.79 Quality of Life in Swallowing Disorders (SWAL-QOL) Quality of Life/Patient Reported Outcomes Outcomes and End Points

Single Pre-Defined Value Selected

C18100 Quality of Life in Swallowing Disorders (SWAL-QOL) - age value SWALQOLAgVal Age of the subject, as part of the Quality of Life in Swallowing Disorders (SWAL-QOL) Age of the subject, as part of the Quality of Life in Swallowing Disorders (SWAL-QOL) What is your age today? Numeric Values No references available Adult Supplemental 3.00 2013-07-18 09:11:50.26 Quality of Life in Swallowing Disorders (SWAL-QOL) Quality of Life/Patient Reported Outcomes Outcomes and End Points

Free-Form Entry

C10300 Quality of Life in Swallowing Disorders (SWAL-QOL) - fear choke food problem indicator SWALQOLFrChokFdProbInd Scale assessing how true the following statement has been for the participant during the last month: I fear I may start choking when I eat food. As part of Quality of Life in Swallowing Disorders (SWAL-QOL). Indicates how often subject feels fear of choking on food again, as part of the Quality of Life in Swallowing Disorders (SWAL-QOL) I fear I amy start choking when I eat food. 1;2;3;4;5 Almost always;Often;Sometimes;Hardly ever;Never Numeric Values

Circle one number on each line

Colleen A. McHorney, PhD, US Outcomes Research, Merck & Co., Inc., 351 North Sumneytown Pike, UG2MW-05, North Wales, PA 19454 Adult Supplemental 3.00 2013-07-22 16:57:17.79 Quality of Life in Swallowing Disorders (SWAL-QOL) Quality of Life/Patient Reported Outcomes Outcomes and End Points

Single Pre-Defined Value Selected

C10279 Quality of Life in Swallowing Disorders (SWAL-QOL) - rare realization hunger indicator SWALQOLRarRealztnHugrInd Scale assessing how true the following statement has been for the participant during the last month: I'm rarely hungry anymore, as part of Quality of Life in Swallowing Disorders (SWAL-QOL). Indicates how rarely subject feels hungry, as part of the Quality of Life in Swallowing Disorders (SWAL-QOL) I'm rarely hungry anymore. 1;2;3;4;5 Very much true;Quite a bit true;Somewhat true;A little true;Not at all true Numeric Values

Circle one number on each line

Colleen A. McHorney, PhD, US Outcomes Research, Merck & Co., Inc., 351 North Sumneytown Pike, UG2MW-05, North Wales, PA 19454 Adult Supplemental 3.00 2013-07-22 16:57:17.79 Quality of Life in Swallowing Disorders (SWAL-QOL) Quality of Life/Patient Reported Outcomes Outcomes and End Points

Single Pre-Defined Value Selected

C10311 Quality of Life in Swallowing Disorders (SWAL-QOL) - swallowing problem changed activities indicator SWALQOLSwllwngProbChngdActInd Scale assessing how true the following statement has been for the participant during the last month: My usual work or leisure activities have changed because of my swallowing problem. As part of Quality of Life in Swallowing Disorders (SWAL-QOL). Indicates subject's work or leisure activities have changed because of swallowing problem, as part of the Quality of Life in Swallowing Disorders (SWAL-QOL) My usual work or leisure activities have changed because of my swallowing problem. 1;2;3;4;5 Strongly agree;Agree;Uncertain;Disagree;Strongly disagree Numeric Values

Circle one number on each line

Colleen A. McHorney, PhD, US Outcomes Research, Merck & Co., Inc., 351 North Sumneytown Pike, UG2MW-05, North Wales, PA 19454 Adult Supplemental 3.00 2013-07-22 16:57:17.79 Quality of Life in Swallowing Disorders (SWAL-QOL) Quality of Life/Patient Reported Outcomes Outcomes and End Points

Single Pre-Defined Value Selected

C10290 Quality of Life in Swallowing Disorders (SWAL-QOL) - clear throat problem indicator SWALQOLClrThrtProbInd Scale assessing how true the following statement has been for the participant during the last month: Having to clear your throat. As part of Quality of Life in Swallowing Disorders (SWAL-QOL). Indicates how often subject experiences having to clear throat, as part of the Quality of Life in Swallowing Disorders (SWAL-QOL) Having to clear your throat 1;2;3;4;5 Almost always;Often;Sometimes;Hardly ever;Never Numeric Values

Circle one number on each line

Colleen A. McHorney, PhD, US Outcomes Research, Merck & Co., Inc., 351 North Sumneytown Pike, UG2MW-05, North Wales, PA 19454 Adult Supplemental 3.00 2013-07-22 16:57:17.79 Quality of Life in Swallowing Disorders (SWAL-QOL) Quality of Life/Patient Reported Outcomes Outcomes and End Points

Single Pre-Defined Value Selected

C10322 Quality of Life in Swallowing Disorders (SWAL-QOL) - general health indicator SWALQOLGenrlHlthInd Scale assessing the general health of the participant. As part of Quality of Life in Swallowing Disorders (SWAL-QOL). Indicates the subject's general health condition, as part of the Quality of Life in Swallowing Disorders (SWAL-QOL) In general, would you say your health is 1;2;3;4;5 Poor;Fair;Good;Very Good;Excellent Numeric Values

Circle one

Colleen A. McHorney, PhD, US Outcomes Research, Merck & Co., Inc., 351 North Sumneytown Pike, UG2MW-05, North Wales, PA 19454 Adult Supplemental 3.00 2013-07-22 16:57:17.79 Quality of Life in Swallowing Disorders (SWAL-QOL) Quality of Life/Patient Reported Outcomes Outcomes and End Points

Single Pre-Defined Value Selected

C18101 Quality of Life in Swallowing Disorders (SWAL-QOL) - gender indicator SWALQOLGendrInd Gender of the subject, as part of the Quality of Life in Swallowing Disorders (SWAL-QOL) Gender of the subject, as part of the Quality of Life in Swallowing Disorders (SWAL-QOL) Are you 1;2 1;2 Numeric Values No references available Adult Supplemental 3.00 2013-07-18 09:11:50.26 Quality of Life in Swallowing Disorders (SWAL-QOL) Quality of Life/Patient Reported Outcomes Outcomes and End Points

Single Pre-Defined Value Selected

C10301 Quality of Life in Swallowing Disorders (SWAL-QOL) - worry pneumonia problem indicator SWALQOLWryPnemnProbInd Scale assessing how true the following statement has been for the participant during the last month: I worry about getting pneumonia. As part of Quality of Life in Swallowing Disorders (SWAL-QOL). Indicates how often subject fear of getting pneumonia, as part of the Quality of Life in Swallowing Disorders (SWAL-QOL) I worry about getting pneumonia. 1;2;3;4;5 Almost always;Often;Sometimes;Hardly ever;Never Numeric Values

Circle one number on each line

Colleen A. McHorney, PhD, US Outcomes Research, Merck & Co., Inc., 351 North Sumneytown Pike, UG2MW-05, North Wales, PA 19454 Adult Supplemental 3.00 2013-07-22 16:57:17.79 Quality of Life in Swallowing Disorders (SWAL-QOL) Quality of Life/Patient Reported Outcomes Outcomes and End Points

Single Pre-Defined Value Selected

C10280 Quality of Life in Swallowing Disorders (SWAL-QOL) - long eating period indicator SWALQOLLngEatngPerdInd Scale assessing how true the following statement has been for the participant during the last month: It takes me forever to eat a meal. As part of Quality of Life in Swallowing Disorders (SWAL-QOL). Indicates how much longer subject to eat, as part of the Quality of Life in Swallowing Disorders (SWAL-QOL) It takes me forever to eat a meal. 1;2;3;4;5 Very much true;Quite a bit true;Somewhat true;A little true;Not at all true Numeric Values

Circle one number on each line

Colleen A. McHorney, PhD, US Outcomes Research, Merck & Co., Inc., 351 North Sumneytown Pike, UG2MW-05, North Wales, PA 19454 Adult Supplemental 3.00 2013-07-22 16:57:17.79 Quality of Life in Swallowing Disorders (SWAL-QOL) Quality of Life/Patient Reported Outcomes Outcomes and End Points

Single Pre-Defined Value Selected

C10312 Quality of Life in Swallowing Disorders (SWAL-QOL) - swallowing problem enjoyable social indicator SWALQOLSwllwngProbEnjblSoclInd Scale assessing how true the following statement has been for the participant during the last month: Social gatherings (like holidays or get-togethers) are not enjoyable because of my swallowing problem. As part of Quality of Life in Swallowing Disorders (SWAL-QOL). Indicates subject no longer enjoys social gatherings because of swallowing problem, as part of the Quality of Life in Swallowing Disorders (SWAL-QOL) Social gatherings (like holidays or get-togethers) are not enjoyable because of my swallowing problem. 1;2;3;4;5 Strongly agree;Agree;Uncertain;Disagree;Strongly disagree Numeric Values

Circle one number on each line

Colleen A. McHorney, PhD, US Outcomes Research, Merck & Co., Inc., 351 North Sumneytown Pike, UG2MW-05, North Wales, PA 19454 Adult Supplemental 3.00 2013-07-22 16:57:17.79 Quality of Life in Swallowing Disorders (SWAL-QOL) Quality of Life/Patient Reported Outcomes Outcomes and End Points

Single Pre-Defined Value Selected

C10291 Quality of Life in Swallowing Disorders (SWAL-QOL) - food sticking throat problem indicator SWALQOLFdStckngThrtProbInd Scale assessing how true the following statement has been for the participant during the last month: Food sticking in your throat. As part of Quality of Life in Swallowing Disorders (SWAL-QOL). Indicates how often subject experiences food sticking to throat, as part of the Quality of Life in Swallowing Disorders (SWAL-QOL) Food sticking in your throat 1;2;3;4;5 Almost always;Often;Sometimes;Hardly ever;Never Numeric Values

Circle one number on each line

Colleen A. McHorney, PhD, US Outcomes Research, Merck & Co., Inc., 351 North Sumneytown Pike, UG2MW-05, North Wales, PA 19454 Adult Supplemental 3.00 2013-07-22 16:57:17.79 Quality of Life in Swallowing Disorders (SWAL-QOL) Quality of Life/Patient Reported Outcomes Outcomes and End Points

Single Pre-Defined Value Selected

C17833 Quality of Life in Swallowing Disorders (SWAL-QOL) - questionnaire help indicator SWALQOLQuestHelpInd Indicator of whether the subject/participant received help filling out the Quality of Life in Swallowing Disorders (SWAL-QOL) questionnaire. Indicator of whether the subject/participant received help filling out the Quality of Life in Swallowing Disorders (SWAL-QOL) - questionnaire. Did anybody help you complete this questionnaire? 1;2 No, I did it myself;Yes, someone helped me fill it out Numeric Values

circle one

No references available Adult Supplemental 3.00 2013-07-22 16:57:17.79 Quality of Life in Swallowing Disorders (SWAL-QOL) Quality of Life/Patient Reported Outcomes Outcomes and End Points

Single Pre-Defined Value Selected

C18102 Quality of Life in Swallowing Disorders (SWAL-QOL) - race indicator SWALQOLRcInd Racial group of the subject, as part of the Quality of Life in Swallowing Disorders (SWAL-QOL) Racial group of the subject, as part of the Quality of Life in Swallowing Disorders (SWAL-QOL) What is your main racial or ethnic group? 1;2;3;4;5 1;2;3;4;5 Numeric Values No references available Adult Supplemental 3.00 2013-07-18 09:11:50.26 Quality of Life in Swallowing Disorders (SWAL-QOL) Quality of Life/Patient Reported Outcomes Outcomes and End Points

Single Pre-Defined Value Selected

C10302 Quality of Life in Swallowing Disorders (SWAL-QOL) - fear choke liquid problem indicator SWALQOLFrChokLiqProbInd Scale assessing how true the following statement has been for the participant during the last month: I am afraid of choking when I drink liquids. As part of Quality of Life in Swallowing Disorders (SWAL-QOL). Indicates how often subject fears choking on liquid again, as part of the Quality of Life in Swallowing Disorders (SWAL-QOL) I am afraid of choking when I drink liquids. 1;2;3;4;5 Almost always;Often;Sometimes;Hardly ever;Never Numeric Values

Circle one number on each line

Colleen A. McHorney, PhD, US Outcomes Research, Merck & Co., Inc., 351 North Sumneytown Pike, UG2MW-05, North Wales, PA 19454 Adult Supplemental 3.00 2013-07-22 16:57:17.79 Quality of Life in Swallowing Disorders (SWAL-QOL) Quality of Life/Patient Reported Outcomes Outcomes and End Points

Single Pre-Defined Value Selected

CSV