CDE Detailed Report

Disease: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Subdomain Name: Fatigue
CRF: Neuro-QOL Adult Bank - Fatigue

Displaying 1 - 19 of 19
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
C20552 Quality of Life in Neurological Disorders (Neuro-Qol) - Tiredness fatigue asssessment past week scale NeuroQolTiredScale The scale representing how often the participant felt tired in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol) The scale representing how often the participant felt tired in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol In the past 7 days I felt tired… 5;4;3;2;1 always;Often;Sometimes;Rarely;Never Numeric Values

Please respond to each question or statement by marking one box per row.

Cella D, Victorson D, Nowinski C, Peterman A, Miller DM.?The Neuro-QOL project: using multiple methods to develop a HRQOL measurement platform to be used in clinical research across neurological conditions.?Qual Life Res?2006;?A14: 1353. http://www.neuroqol.org/Pages/default.aspx Adult;Pediatric Exploratory 1.00 2015-05-20 09:07:55.0 Neuro-QOL Adult Bank - Fatigue Fatigue Outcomes and End Points

Single Pre-Defined Value Selected

C20577 Quality of Life in Neurological Disorders (Neuro-Qol) - Limit social activity physical weakness fatigue asssessment past week scale NeuroQolLimitSocialWeakScale The scale representing how often the participant had to limit social activity because of being physically weak in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol) The scale representing how often the participant had to limit social activity because of being physically weak in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol In the past 7 days I had to limit my social activity because I was physically weak… 5;4;3;2;1 always;Often;Sometimes;Rarely;Never Numeric Values

Please respond to each question or statement by marking one box per row.

Cella D, Victorson D, Nowinski C, Peterman A, Miller DM.?The Neuro-QOL project: using multiple methods to develop a HRQOL measurement platform to be used in clinical research across neurological conditions.?Qual Life Res?2006;?A14: 1353. http://www.neuroqol.org/Pages/default.aspx Adult;Pediatric Exploratory 1.00 2015-05-20 09:26:05.0 Neuro-QOL Adult Bank - Fatigue Fatigue Outcomes and End Points

Single Pre-Defined Value Selected

C20554 Quality of Life in Neurological Disorders (Neuro-Qol) - Limit social activity fatigue assessment past week scale NeuroQolLimitSocialTiredScale The scale representing how often the participant had to limit social activity because of being tired in the past 7 days, as part of the Quality of Life in Neurological Disorders(Neuro-Qol) The scale representing how often the participant had to limit social activity because of being tired in the past 7 days, as part of the Quality of Life in Neurological Disorders(Neuro-Qol In the past 7 days I had to limit my social activity because I was tired… 5;4;3;2;1 always;Often;Sometimes;Rarely;Never Numeric Values

Please respond to each question or statement by marking one box per row.

Cella D, Victorson D, Nowinski C, Peterman A, Miller DM.?The Neuro-QOL project: using multiple methods to develop a HRQOL measurement platform to be used in clinical research across neurological conditions.?Qual Life Res?2006;?A14: 1353. http://www.neuroqol.org/Pages/default.aspx Adult;Pediatric Exploratory 1.00 2015-05-20 09:09:34.0 Neuro-QOL Adult Bank - Fatigue Fatigue Outcomes and End Points

Single Pre-Defined Value Selected

C20579 Quality of Life in Neurological Disorders (Neuro-Qol) - Force self action physical weakness fatigue assessment past week scale NeuroQolForceWakeUpWeakScale The scale representing how often the participant had to force self to get up and do things because they were physically too weak in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol) The scale representing how often the participant had to force self to get up and do things because they were physically too weak in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol In the past 7 days I had to force myself to get up and do things because I was physically too weak… 5;4;3;2;1 always;Often;Sometimes;Rarely;Never Numeric Values

Please respond to each question or statement by marking one box per row.

Cella D, Victorson D, Nowinski C, Peterman A, Miller DM.?The Neuro-QOL project: using multiple methods to develop a HRQOL measurement platform to be used in clinical research across neurological conditions.?Qual Life Res?2006;?A14: 1353. http://www.neuroqol.org/Pages/default.aspx Adult;Pediatric Exploratory 1.00 2015-05-20 09:27:48.0 Neuro-QOL Adult Bank - Fatigue Fatigue Outcomes and End Points

Single Pre-Defined Value Selected

C20557 Quality of Life in Neurological Disorders (Neuro-Qol) - Usual activity assistance need fatigue assessment past week scale NeuroQolUsualActFatigueScale The scale representing how often the participant needed help doing usual activities because of fatigue in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol) The scale representing how often the participant needed help doing usual activities because of fatigue in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol In the past 7 days I needed help doing my usual activities because of my fatigue… 5;4;3;2;1 always;Often;Sometimes;Rarely;Never Numeric Values

Please respond to each question or statement by marking one box per row.

Cella D, Victorson D, Nowinski C, Peterman A, Miller DM.?The Neuro-QOL project: using multiple methods to develop a HRQOL measurement platform to be used in clinical research across neurological conditions.?Qual Life Res?2006;?A14: 1353. http://www.neuroqol.org/Pages/default.aspx Adult;Pediatric Exploratory 1.00 2015-05-20 09:11:04.0 Neuro-QOL Adult Bank - Fatigue Fatigue Outcomes and End Points

Single Pre-Defined Value Selected

C20560 Quality of Life in Neurological Disorders (Neuro-Qol) - Sleep need during day past week scale NeuroQolNeedSleepDayScale The scale representing how often the participant needed to sleep during the day in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol) The scale representing how often the participant needed to sleep during the day in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol In the past 7 days I needed to sleep during the day… 5;4;3;2;1 always;Often;Sometimes;Rarely;Never Numeric Values

Please respond to each question or statement by marking one box per row.

Cella D, Victorson D, Nowinski C, Peterman A, Miller DM.?The Neuro-QOL project: using multiple methods to develop a HRQOL measurement platform to be used in clinical research across neurological conditions.?Qual Life Res?2006;?A14: 1353. http://www.neuroqol.org/Pages/default.aspx Adult;Pediatric Exploratory 1.00 2015-05-20 09:13:32.0 Neuro-QOL Adult Bank - Fatigue Fatigue Outcomes and End Points

Single Pre-Defined Value Selected

C20563 Quality of Life in Neurological Disorders (Neuro-Qol) - Difficulty begin task fatigue assessment past week scale NeuroQolTroubleStartScale The scale representing how often the participant had trouble starting things because they were too tired in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol) The scale representing how often the participant had trouble starting things because they were too tired in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol In the past 7 days I had trouble starting things because I was too tired… 5;4;3;2;1 always;Often;Sometimes;Rarely;Never Numeric Values

Please respond to each question or statement by marking one box per row.

Cella D, Victorson D, Nowinski C, Peterman A, Miller DM.?The Neuro-QOL project: using multiple methods to develop a HRQOL measurement platform to be used in clinical research across neurological conditions.?Qual Life Res?2006;?A14: 1353. http://www.neuroqol.org/Pages/default.aspx Adult;Pediatric Exploratory 1.00 2015-05-20 09:15:18.0 Neuro-QOL Adult Bank - Fatigue Fatigue Outcomes and End Points

Single Pre-Defined Value Selected

C20544 Quality of Life in Neurological Disorders (Neuro-Qol) - Exhaustion fatigue assessment past week scale NeuroQolExhaustedScale The scale representing how often the participant felt exhausted in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol) The scale representing how often the participant felt exhausted in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol In the past 7 days I felt exhausted… 5;4;3;2;1 always;Often;Sometimes;Rarely;Never Numeric Values

Please respond to each question or statement by marking one box per row.

Cella D, Victorson D, Nowinski C, Peterman A, Miller DM.?The Neuro-QOL project: using multiple methods to develop a HRQOL measurement platform to be used in clinical research across neurological conditions.?Qual Life Res?2006;?A14: 1353. http://www.neuroqol.org/Pages/default.aspx Adult;Pediatric Exploratory 1.00 2015-05-20 08:55:11.0 Neuro-QOL Adult Bank - Fatigue Fatigue Outcomes and End Points

Single Pre-Defined Value Selected

C20566 Quality of Life in Neurological Disorders (Neuro-Qol) - Difficulty finish task fatigue assessment past week scale NeuroQolTroubleFinishScale The scale representing how often the participant had trouble finishing things because they were too tired in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol) The scale representing how often the participant had trouble finishing things because they were too tired in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol In the past 7 days I had trouble finishing things because I was too tired… 5;4;3;2;1 always;Often;Sometimes;Rarely;Never Numeric Values

Please respond to each question or statement by marking one box per row.

Cella D, Victorson D, Nowinski C, Peterman A, Miller DM.?The Neuro-QOL project: using multiple methods to develop a HRQOL measurement platform to be used in clinical research across neurological conditions.?Qual Life Res?2006;?A14: 1353. http://www.neuroqol.org/Pages/default.aspx Adult;Pediatric Exploratory 1.00 2015-05-20 09:16:49.0 Neuro-QOL Adult Bank - Fatigue Fatigue Outcomes and End Points

Single Pre-Defined Value Selected

C20546 Quality of Life in Neurological Disorders (Neuro-Qol) - No energy fatigue asssessment past week scale NeuroQolNoEnergyScale The scale representing how often the participant felt no energy in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol) The scale representing how often the participant felt no energy in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol In the past 7 days I felt that I had no energy… 5;4;3;2;1 always;Often;Sometimes;Rarely;Never Numeric Values

Please respond to each question or statement by marking one box per row.

Cella D, Victorson D, Nowinski C, Peterman A, Miller DM.?The Neuro-QOL project: using multiple methods to develop a HRQOL measurement platform to be used in clinical research across neurological conditions.?Qual Life Res?2006;?A14: 1353. http://www.neuroqol.org/Pages/default.aspx Adult;Pediatric Exploratory 1.00 2015-05-20 08:57:12.0 Neuro-QOL Adult Bank - Fatigue Fatigue Outcomes and End Points

Single Pre-Defined Value Selected

C20569 Quality of Life in Neurological Disorders (Neuro-Qol) - No short walk fatigue assessment past week scale NeuroQolTiredShortWalkScale The scale representing how often the participant was too tired to take a short walk in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol) The scale representing how often the participant was too tired to take a short walk in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol In the past 7 days I was too tired to take a short walk… 5;4;3;2;1 always;Often;Sometimes;Rarely;Never Numeric Values

Please respond to each question or statement by marking one box per row.

Cella D, Victorson D, Nowinski C, Peterman A, Miller DM.?The Neuro-QOL project: using multiple methods to develop a HRQOL measurement platform to be used in clinical research across neurological conditions.?Qual Life Res?2006;?A14: 1353. http://www.neuroqol.org/Pages/default.aspx Adult;Pediatric Exploratory 1.00 2015-05-20 09:18:49.0 Neuro-QOL Adult Bank - Fatigue Fatigue Outcomes and End Points

Single Pre-Defined Value Selected

C20547 Quality of Life in Neurological Disorders (Neuro-Qol) - Fatigue assessment past week scale NeuroQolFatigueScale The scale representing how often the participant felt fatigued in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol) The scale representing how often the participant felt fatigued in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol In the past 7 days I felt fatigued… 5;4;3;2;1 always;Often;Sometimes;Rarely;Never Numeric Values

Please respond to each question or statement by marking one box per row.

Cella D, Victorson D, Nowinski C, Peterman A, Miller DM.?The Neuro-QOL project: using multiple methods to develop a HRQOL measurement platform to be used in clinical research across neurological conditions.?Qual Life Res?2006;?A14: 1353. http://www.neuroqol.org/Pages/default.aspx Adult;Pediatric Exploratory 1.00 2015-05-20 09:00:48.0 Neuro-QOL Adult Bank - Fatigue Fatigue Outcomes and End Points

Single Pre-Defined Value Selected

C20571 Quality of Life in Neurological Disorders (Neuro-Qol) - Poor appetite fatigue assessment past week scale NeuroQolTiredEatScale The scale representing how often the participant was too tired to eat in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol) The scale representing how often the participant was too tired to eat in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol In the past 7 days I was too tired to eat… 5;4;3;2;1 always;Often;Sometimes;Rarely;Never Numeric Values

Please respond to each question or statement by marking one box per row.

Cella D, Victorson D, Nowinski C, Peterman A, Miller DM.?The Neuro-QOL project: using multiple methods to develop a HRQOL measurement platform to be used in clinical research across neurological conditions.?Qual Life Res?2006;?A14: 1353. http://www.neuroqol.org/Pages/default.aspx Adult;Pediatric Exploratory 1.00 2015-05-20 09:20:25.0 Neuro-QOL Adult Bank - Fatigue Fatigue Outcomes and End Points

Single Pre-Defined Value Selected

C20548 Quality of Life in Neurological Disorders (Neuro-Qol) - No household chore fatigue assessment past week scale NeuroQolTiredChoresScale The scale representing how often the participant felt too tired to do household chores in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol) The scale representing how often the participant felt too tired to do household chores in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol In the past 7 days I was too tired to do my household chores… 5;4;3;2;1 always;Often;Sometimes;Rarely;Never Numeric Values

Please respond to each question or statement by marking one box per row.

Cella D, Victorson D, Nowinski C, Peterman A, Miller DM.?The Neuro-QOL project: using multiple methods to develop a HRQOL measurement platform to be used in clinical research across neurological conditions.?Qual Life Res?2006;?A14: 1353. http://www.neuroqol.org/Pages/default.aspx Adult;Pediatric Exploratory 1.00 2015-05-20 09:02:14.0 Neuro-QOL Adult Bank - Fatigue Fatigue Outcomes and End Points

Single Pre-Defined Value Selected

C20572 Quality of Life in Neurological Disorders (Neuro-Qol) - Rest during day fatigue assessment past week scale NeuroQolNeedRestDayScale The scale representing how often the participant was so tired that they needed rest during the day in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol) The scale representing how often the participant was so tired that they needed rest during the day in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol In the past 7 days I was so tired that I needed to rest during the day… 5;4;3;2;1 always;Often;Sometimes;Rarely;Never Numeric Values

Please respond to each question or statement by marking one box per row.

Cella D, Victorson D, Nowinski C, Peterman A, Miller DM.?The Neuro-QOL project: using multiple methods to develop a HRQOL measurement platform to be used in clinical research across neurological conditions.?Qual Life Res?2006;?A14: 1353. http://www.neuroqol.org/Pages/default.aspx Adult;Pediatric Exploratory 1.00 2015-05-20 09:21:49.0 Neuro-QOL Adult Bank - Fatigue Fatigue Outcomes and End Points

Single Pre-Defined Value Selected

C20549 Quality of Life in Neurological Disorders (Neuro-Qol) - Not leave house fatigue assessment past week scale NeuroQolTiredLeavehouseScale The scale representing how often the participant felt too tired to leave the house in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol) The scale representing how often the participant felt too tired to leave the house in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol In the past 7 days I was too tired to leave the house… 5;4;3;2;1 always;Often;Sometimes;Rarely;Never Numeric Values

Please respond to each question or statement by marking one box per row.

Cella D, Victorson D, Nowinski C, Peterman A, Miller DM.?The Neuro-QOL project: using multiple methods to develop a HRQOL measurement platform to be used in clinical research across neurological conditions.?Qual Life Res?2006;?A14: 1353. http://www.neuroqol.org/Pages/default.aspx Adult;Pediatric Exploratory 1.00 2015-05-20 09:03:46.0 Neuro-QOL Adult Bank - Fatigue Fatigue Outcomes and End Points

Single Pre-Defined Value Selected

C20573 Quality of Life in Neurological Disorders (Neuro-Qol) - Overall weakness fatigue assessement past week scale NeuroQolWeakAllOverScale The scale representing how often the participant felt weak all over in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol) The scale representing how often the participant felt weak all over in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol In the past 7 days I felt weak all over… 5;4;3;2;1 always;Often;Sometimes;Rarely;Never Numeric Values

Please respond to each question or statement by marking one box per row.

Cella D, Victorson D, Nowinski C, Peterman A, Miller DM.?The Neuro-QOL project: using multiple methods to develop a HRQOL measurement platform to be used in clinical research across neurological conditions.?Qual Life Res?2006;?A14: 1353. http://www.neuroqol.org/Pages/default.aspx Adult;Pediatric Exploratory 1.00 2015-05-20 09:23:25.0 Neuro-QOL Adult Bank - Fatigue Fatigue Outcomes and End Points

Single Pre-Defined Value Selected

C20550 Quality of Life in Neurological Disorders (Neuro-Qol) - Frustration tired for action fatigue assessment past week scale NeuroQolFrustTiredThingsScale The scale representing how often the participant felt frustrated by being too tired to do the things they wanted to do in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol) The scale representing how often the participant felt frustrated by being too tired to do the things they wanted to do in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol In the past 7 days I was frustrated by being too tired to do the things I wanted to do… 5;4;3;2;1 always;Often;Sometimes;Rarely;Never Numeric Values

Please respond to each question or statement by marking one box per row.

Cella D, Victorson D, Nowinski C, Peterman A, Miller DM.?The Neuro-QOL project: using multiple methods to develop a HRQOL measurement platform to be used in clinical research across neurological conditions.?Qual Life Res?2006;?A14: 1353. http://www.neuroqol.org/Pages/default.aspx Adult;Pediatric Exploratory 1.00 2015-05-20 09:05:34.0 Neuro-QOL Adult Bank - Fatigue Fatigue Outcomes and End Points

Single Pre-Defined Value Selected

C20575 Quality of Life in Neurological Disorders (Neuro-Qol) - Usual activity help requirement fatigue assessment past week scale NeuroQolUsualActWeakScale The scale representing how often the participant needed help during usual activities because of weakness in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol) The scale representing how often the participant needed help during usual activities because of weakness in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol In the past 7 days I needed help doing my usual activities because of my weakness… 5;4;3;2;1 always;Often;Sometimes;Rarely;Never Numeric Values

Please respond to each question or statement by marking one box per row.

Cella D, Victorson D, Nowinski C, Peterman A, Miller DM.?The Neuro-QOL project: using multiple methods to develop a HRQOL measurement platform to be used in clinical research across neurological conditions.?Qual Life Res?2006;?A14: 1353. http://www.neuroqol.org/Pages/default.aspx Adult;Pediatric Exploratory 1.00 2015-05-20 09:24:48.0 Neuro-QOL Adult Bank - Fatigue Fatigue Outcomes and End Points

Single Pre-Defined Value Selected

CSV