CDE Detailed Report
Disease: Sickle Cell Disease
Sub-Domain: Outcomes and End Points
CRF: PhenX Toolkit: Quality of Life - Adult

29 results.
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 Source Form Set Form Field
C59244 Feel worthless past 7 day frequency grade FeelWrthlssPst7DyFreqGrade Grade of frequency over the past 7 days that the subject/participant felt worthless Grade of frequency over the past 7 days that the subject/participant felt worthless In the past 7 days I felt worthless Never;Rarely;Sometimes;Often;Always Never;Rarely;Sometimes;Often;Always Alphanumeric PhenX Protocol: Quality of Life - Adult (#221302) Adult Proposed 1.00 2019-03-28 10:10:17.0 PhenX Toolkit: Quality of Life - Adult Outcomes and End Points Quality of Life/Patient Reported Outcomes

Single Pre-Defined Value Selected

PhenX Neurology, Quality of Life, and Health Services Specialty Collection Quality of Life - Adult 9
C59255 Fall asleep difficult past 7 day grade FallAslpDiffcltPst7DyGrade Grade of difficulty falling asleep over the past 7 days Grade of difficulty falling asleep over the past 7 days In the past 7 days I had difficulty falling asleep Not at all;A little bit;Somewhat;quite a bit;very much Not at all;A little bit;Somewhat;quite a bit;very much Alphanumeric PhenX Protocol: Quality of Life - Adult (#221302) Adult Proposed 1.00 2019-03-28 11:00:57.0 PhenX Toolkit: Quality of Life - Adult Outcomes and End Points Quality of Life/Patient Reported Outcomes

Single Pre-Defined Value Selected

PhenX Neurology, Quality of Life, and Health Services Specialty Collection Quality of Life - Adult 20
C59245 Feel helpless past 7 day frequency grade FeelHelplssPst7DyFreqGrade Grade of frequency over the past 7 days that the subject/participant felt helpless Grade of frequency over the past 7 days that the subject/participant felt helpless In the past 7 days I felt helpless Never;Rarely;Sometimes;Often;Always Never;Rarely;Sometimes;Often;Always Alphanumeric PhenX Protocol: Quality of Life - Adult (#221302) Adult Proposed 1.00 2019-03-28 10:10:17.0 PhenX Toolkit: Quality of Life - Adult Outcomes and End Points Quality of Life/Patient Reported Outcomes

Single Pre-Defined Value Selected

PhenX Neurology, Quality of Life, and Health Services Specialty Collection Quality of Life - Adult 10
C59256 Leisure activity difficulty grade LeisurAcivityDifficultyGrade Grade of difficulty doing regular leisure activities Grade of difficulty doing regular leisure activities I have trouble doing all of my regular leisure activities with others Never;Rarely;Sometimes;Often;Always Never;Rarely;Sometimes;Often;Always Alphanumeric PhenX Protocol: Quality of Life - Adult (#221302) Adult Proposed 1.00 2019-03-28 11:09:43.0 PhenX Toolkit: Quality of Life - Adult Outcomes and End Points Quality of Life/Patient Reported Outcomes

Single Pre-Defined Value Selected

PhenX Neurology, Quality of Life, and Health Services Specialty Collection Quality of Life - Adult 21
C59235 Pain intensity average past 7 day scale PainIntnstyAvgPst7DyScl Scale of the subject/participant's average pain intensity over the past 7 days Scale of the subject/participant's average pain intensity over the past 7 days In the past 7 days how would you rate your pain on average? 0;10;1;2;3;4;5;6;7;8;9 No Pain;Worst pain imaginable;1;2;3;4;5;6;7;8;9 Numeric Values PhenX Protocol: Quality of Life - Adult (#221302) Adult Proposed 1.00 2019-03-27 15:01:10.0 PhenX Toolkit: Quality of Life - Adult Outcomes and End Points Quality of Life/Patient Reported Outcomes

Single Pre-Defined Value Selected

PhenX Neurology, Quality of Life, and Health Services Specialty Collection Quality of Life - Pediatric 25
C59246 Feel depressed past 7 day frequency grade FeelDepressedPst7DyFreqGrade Grade of frequency over the past 7 days that the subject/participant felt depressed Grade of frequency over the past 7 days that the subject/participant felt depressed In the past 7 days I felt depressed Never;Rarely;Sometimes;Often;Always Never;Rarely;Sometimes;Often;Always Alphanumeric PhenX Protocol: Quality of Life - Adult (#221302) Adult Proposed 1.00 2019-03-28 10:10:17.0 PhenX Toolkit: Quality of Life - Adult Outcomes and End Points Quality of Life/Patient Reported Outcomes

Single Pre-Defined Value Selected

PhenX Neurology, Quality of Life, and Health Services Specialty Collection Quality of Life - Adult 11
C59257 Family activity difficulty grade FamilyAcivityDifficultyGrade Grade of difficulty doing family activities Grade of difficulty doing family activities I have trouble doing all of the family activities that I want to do Never;Rarely;Sometimes;Often;Always Never;Rarely;Sometimes;Often;Always Alphanumeric PhenX Protocol: Quality of Life - Adult (#221302) Adult Proposed 1.00 2019-03-28 11:09:43.0 PhenX Toolkit: Quality of Life - Adult Outcomes and End Points Quality of Life/Patient Reported Outcomes

Single Pre-Defined Value Selected

PhenX Neurology, Quality of Life, and Health Services Specialty Collection Quality of Life - Adult 22
C59236 Do chore difficulty grade DoChoreDifficultyGrade Grade of difficulty the subject/participant has doing chores. Grade of difficulty the subject/participant has doing chores. Are you able to do chores such as vacuuming or yard work? Without any difficulty;With a little difficulty;With much difficulty;With some difficulty;Unable to do Without any difficulty;With a little difficulty;With much difficulty;With some difficulty;Unable to do Alphanumeric PhenX Protocol: Quality of Life - Adult (#221302) Adult Proposed 1.00 2019-03-28 09:53:12.0 PhenX Toolkit: Quality of Life - Adult Outcomes and End Points Quality of Life/Patient Reported Outcomes

Single Pre-Defined Value Selected

PhenX Neurology, Quality of Life, and Health Services Specialty Collection Quality of Life - Adult 1
C59247 Feel hopeless past 7 day frequency grade FeelHopelssPst7DyFreqGrade Grade of frequency over the past 7 days that the subject/participant felt hopeless Grade of frequency over the past 7 days that the subject/participant felt hopeless In the past 7 days I felt hopeless Never;Rarely;Sometimes;Often;Always Never;Rarely;Sometimes;Often;Always Alphanumeric PhenX Protocol: Quality of Life - Adult (#221302) Adult Proposed 1.00 2019-03-28 10:10:17.0 PhenX Toolkit: Quality of Life - Adult Outcomes and End Points Quality of Life/Patient Reported Outcomes

Single Pre-Defined Value Selected

PhenX Neurology, Quality of Life, and Health Services Specialty Collection Quality of Life - Adult 12
C59258 Work difficulty grade WorkDifficultyGrade Grade of difficulty doing usual work including work at home Grade of difficulty doing usual work including work at home I have trouble doing all of my usual work (include work at home) Never;Rarely;Sometimes;Often;Always Never;Rarely;Sometimes;Often;Always Alphanumeric PhenX Protocol: Quality of Life - Adult (#221302) Adult Proposed 1.00 2019-03-28 11:09:43.0 PhenX Toolkit: Quality of Life - Adult Outcomes and End Points Quality of Life/Patient Reported Outcomes

Single Pre-Defined Value Selected

PhenX Neurology, Quality of Life, and Health Services Specialty Collection Quality of Life - Adult 23
C59237 Use stairs normal pace difficulty grade UseStairNrmlPacDiffGrade Grade of difficulty the subject/participant has using stairs at a normal pace. Grade of difficulty the subject/participant has using stairs at a normal pace. Are you able to go up and down stairs at a normal pace Without any difficulty;With a little difficulty;With much difficulty;With some difficulty;Unable to do Without any difficulty;With a little difficulty;With much difficulty;With some difficulty;Unable to do Alphanumeric PhenX Protocol: Quality of Life - Adult (#221302) Adult Proposed 1.00 2019-03-28 09:53:12.0 PhenX Toolkit: Quality of Life - Adult Outcomes and End Points Quality of Life/Patient Reported Outcomes

Single Pre-Defined Value Selected

PhenX Neurology, Quality of Life, and Health Services Specialty Collection Quality of Life - Adult 2
C59248 Feel fatigue past 7 day status FeelFatiguePst7DyStat Status over the past 7 days of the subject/participant's feelings of fatigue Status over the past 7 days of the subject/participant's feelings of fatigue During the past 7 days I feel fatigued Not at all;A little bit;Somewhat;quite a bit;very much Not at all;A little bit;Somewhat;quite a bit;very much Alphanumeric PhenX Protocol: Quality of Life - Adult (#221302) Adult Proposed 1.00 2019-03-28 10:35:56.0 PhenX Toolkit: Quality of Life - Adult Outcomes and End Points Quality of Life/Patient Reported Outcomes

Single Pre-Defined Value Selected

PhenX Neurology, Quality of Life, and Health Services Specialty Collection Quality of Life - Adult 13
C59259 Activity with friend difficulty grade ActvtyWFriendDifficultyGrade Grade of difficulty doing activities with friends Grade of difficulty doing activities with friends I have trouble doing all of the activities with friends that I want to do Never;Rarely;Sometimes;Often;Always Never;Rarely;Sometimes;Often;Always Alphanumeric PhenX Protocol: Quality of Life - Adult (#221302) Adult Proposed 1.00 2019-03-28 11:09:43.0 PhenX Toolkit: Quality of Life - Adult Outcomes and End Points Quality of Life/Patient Reported Outcomes

Single Pre-Defined Value Selected

PhenX Neurology, Quality of Life, and Health Services Specialty Collection Quality of Life - Adult 24
C59238 Walk 15 minute difficulty grade Walk15MinuteDiffGrade Grade of difficulty the subject/participant has walking for 15 minutes Grade of difficulty the subject/participant has walking for 15 minutes Are you able to go for a walk of at least 15 minutes? Without any difficulty;With a little difficulty;With much difficulty;With some difficulty;Unable to do Without any difficulty;With a little difficulty;With much difficulty;With some difficulty;Unable to do Alphanumeric PhenX Protocol: Quality of Life - Adult (#221302) Adult Proposed 1.00 2019-03-28 09:53:12.0 PhenX Toolkit: Quality of Life - Adult Outcomes and End Points Quality of Life/Patient Reported Outcomes

Single Pre-Defined Value Selected

PhenX Neurology, Quality of Life, and Health Services Specialty Collection Quality of Life - Adult 3
C59249 Fatigue interfere start activity past 7 day status FatigIntrfrStrtActvtPst7DyStat Status over the past 7 days of the subject/participant's fatigue interfering with his or her ability to start activities Status over the past 7 days of the subject/participant's fatigue interfering with his or her ability to start activities During the past 7 days I have trouble starting things because I am tired Not at all;A little bit;Somewhat;quite a bit;very much Not at all;A little bit;Somewhat;quite a bit;very much Alphanumeric PhenX Protocol: Quality of Life - Adult (#221302) Adult Proposed 1.00 2019-03-28 10:35:56.0 PhenX Toolkit: Quality of Life - Adult Outcomes and End Points Quality of Life/Patient Reported Outcomes

Single Pre-Defined Value Selected

PhenX Neurology, Quality of Life, and Health Services Specialty Collection Quality of Life - Adult 14
C59260 Pain interfere daily activity past 7 day grade PnIntrfrDlyActvtyPst7DyGrade Grade of interference with daily activities due to pain over the past 7 days Grade of interference with daily activities due to pain over the past 7 days In the past 7 days how much did pain interfere with your day to day activities? Not at all;A little bit;Somewhat;quite a bit;very much Not at all;A little bit;Somewhat;quite a bit;very much Alphanumeric PhenX Protocol: Quality of Life - Adult (#221302) Adult Proposed 1.00 2019-03-28 11:19:14.0 PhenX Toolkit: Quality of Life - Adult Outcomes and End Points Quality of Life/Patient Reported Outcomes

Single Pre-Defined Value Selected

PhenX Neurology, Quality of Life, and Health Services Specialty Collection Quality of Life - Adult 25
C59239 Shop run errand difficulty grade ShopRunErrandDiffGrade Grade of difficulty the subject/participant has shopping and running errands Grade of difficulty the subject/participant has shopping and running errands Are you able to run errands and shop? Without any difficulty;With a little difficulty;With much difficulty;With some difficulty;Unable to do Without any difficulty;With a little difficulty;With much difficulty;With some difficulty;Unable to do Alphanumeric PhenX Protocol: Quality of Life - Adult (#221302) Adult Proposed 1.00 2019-03-28 09:53:12.0 PhenX Toolkit: Quality of Life - Adult Outcomes and End Points Quality of Life/Patient Reported Outcomes

Single Pre-Defined Value Selected

PhenX Neurology, Quality of Life, and Health Services Specialty Collection Quality of Life - Adult 4
C59250 Feel run down past 7 day average status FeelRunDownPst7DyAvgStat Status over the past 7 days of the subject/participant's average feeling of being run down Status over the past 7 days of the subject/participant's average feeling of being run down In the past 7 days how run-down did you feel on average? Not at all;A little bit;Somewhat;quite a bit;very much Not at all;A little bit;Somewhat;quite a bit;very much Alphanumeric PhenX Protocol: Quality of Life - Adult (#221302) Adult Proposed 1.00 2019-03-28 10:35:56.0 PhenX Toolkit: Quality of Life - Adult Outcomes and End Points Quality of Life/Patient Reported Outcomes

Single Pre-Defined Value Selected

PhenX Neurology, Quality of Life, and Health Services Specialty Collection Quality of Life - Adult 15
C59261 Pain interfere home work past 7 day grade PnIntrfrHomeWorkPst7DyGrade Grade of interference with work around home due to pain over the past 7 days Grade of interference with work around home due to pain over the past 7 days In the past 7 days how much did pain interfere with work around the home Not at all;A little bit;Somewhat;quite a bit;very much Not at all;A little bit;Somewhat;quite a bit;very much Alphanumeric PhenX Protocol: Quality of Life - Adult (#221302) Adult Proposed 1.00 2019-03-28 11:19:14.0 PhenX Toolkit: Quality of Life - Adult Outcomes and End Points Quality of Life/Patient Reported Outcomes

Single Pre-Defined Value Selected

PhenX Neurology, Quality of Life, and Health Services Specialty Collection Quality of Life - Adult 26
C59240 Fearful past 7 day frequency grade FearfulPst7DyFreqGrade Grade of frequency over the past 7 days that the subject/participant felt fearful Grade of frequency over the past 7 days that the subject/participant felt fearful In the past 7 days I felt fearful Never;Rarely;Sometimes;Often;Always Never;Rarely;Sometimes;Often;Always Alphanumeric PhenX Protocol: Quality of Life - Adult (#221302) Adult Proposed 1.00 2019-03-28 10:10:17.0 PhenX Toolkit: Quality of Life - Adult Outcomes and End Points Quality of Life/Patient Reported Outcomes

Single Pre-Defined Value Selected

PhenX Neurology, Quality of Life, and Health Services Specialty Collection Quality of Life - Adult 5
C59251 Feel fatigue past 7 day average status FeelFatiguePst7DyAvgStat Status over the past 7 days of the subject/participant's average feeling of fatigue Status over the past 7 days of the subject/participant's average feeling of fatigue In the past 7 days how fatigued were you on average? Not at all;A little bit;Somewhat;quite a bit;very much Not at all;A little bit;Somewhat;quite a bit;very much Alphanumeric PhenX Protocol: Quality of Life - Adult (#221302) Adult Proposed 1.00 2019-03-28 10:35:56.0 PhenX Toolkit: Quality of Life - Adult Outcomes and End Points Quality of Life/Patient Reported Outcomes

Single Pre-Defined Value Selected

PhenX Neurology, Quality of Life, and Health Services Specialty Collection Quality of Life - Adult 16
C59262 Pain interfere social activity past 7 day grade PnIntrfrSoclActvtyPst7DyGrade Grade of interference with social activities due to pain over the past 7 days Grade of interference with social activities due to pain over the past 7 days In the past 7 days how much did pain interfere with your ability to participate in social activities? Not at all;A little bit;Somewhat;quite a bit;very much Not at all;A little bit;Somewhat;quite a bit;very much Alphanumeric PhenX Protocol: Quality of Life - Adult (#221302) Adult Proposed 1.00 2019-03-28 11:19:14.0 PhenX Toolkit: Quality of Life - Adult Outcomes and End Points Quality of Life/Patient Reported Outcomes

Single Pre-Defined Value Selected

PhenX Neurology, Quality of Life, and Health Services Specialty Collection Quality of Life - Adult 27
C59241 Hard focus anything anxiety past 7 day frequency grade HdFocAnyAnxPst7DyFreqGrade Grade of frequency over the past 7 days that the subject/participant had difficulty focusing on anything but his or her anxiety Grade of frequency over the past 7 days that the subject/participant had difficulty focusing on anything but his or her anxiety In the past 7 days I found it hard to focus on anything other than my anxiety Never;Rarely;Sometimes;Often;Always Never;Rarely;Sometimes;Often;Always Alphanumeric PhenX Protocol: Quality of Life - Adult (#221302) Adult Proposed 1.00 2019-03-28 10:10:17.0 PhenX Toolkit: Quality of Life - Adult Outcomes and End Points Quality of Life/Patient Reported Outcomes

Single Pre-Defined Value Selected

PhenX Neurology, Quality of Life, and Health Services Specialty Collection Quality of Life - Adult 6
C59252 Sleep quality past 7 day grade SleepQualtyPst7DyGrade Grade of the subject/participant's sleep quality over the past 7 days Grade of the subject/participant's sleep quality over the past 7 days In the past 7 days my sleep quality was Very Poor;Poor;Fair;Good;Very good Very Poor;Poor;Fair;Good;Very good Alphanumeric PhenX Protocol: Quality of Life - Adult (#221302) Adult Proposed 1.00 2019-03-28 10:56:01.0 PhenX Toolkit: Quality of Life - Adult Outcomes and End Points Quality of Life/Patient Reported Outcomes

Single Pre-Defined Value Selected

PhenX Neurology, Quality of Life, and Health Services Specialty Collection Quality of Life - Adult 17
C59263 Pain interfere household chore past 7 day grade PnIntrfrHshldChorPst7DyGrade Grade of interference with household chores due to pain over the past 7 days Grade of interference with household chores due to pain over the past 7 days In the past 7 days how much did pain interfere with your household chores? Not at all;A little bit;Somewhat;quite a bit;very much Not at all;A little bit;Somewhat;quite a bit;very much Alphanumeric PhenX Protocol: Quality of Life - Adult (#221302) Adult Proposed 1.00 2019-03-28 11:19:14.0 PhenX Toolkit: Quality of Life - Adult Outcomes and End Points Quality of Life/Patient Reported Outcomes

Single Pre-Defined Value Selected

PhenX Neurology, Quality of Life, and Health Services Specialty Collection Quality of Life - Adult 28
C59242 Worry overwhelm past 7 day frequency grade WorryOvrwhlmPst7DyFreqGrade Grade of frequency over the past 7 days that the subject/participant was overwhelmed by his or her worries Grade of frequency over the past 7 days that the subject/participant was overwhelmed by his or her worries In the past 7 days my worries overwhelmed me Never;Rarely;Sometimes;Often;Always Never;Rarely;Sometimes;Often;Always Alphanumeric PhenX Protocol: Quality of Life - Adult (#221302) Adult Proposed 1.00 2019-03-28 10:10:17.0 PhenX Toolkit: Quality of Life - Adult Outcomes and End Points Quality of Life/Patient Reported Outcomes

Single Pre-Defined Value Selected

PhenX Neurology, Quality of Life, and Health Services Specialty Collection Quality of Life - Adult 7
C59253 Sleep refresh past 7 day grade SleepRefreshPst7DyGrade Grade of refreshing sleep over the past 7 days Grade of refreshing sleep over the past 7 days In the past 7 days my sleep was refreshing Not at all;A little bit;Somewhat;quite a bit;very much Not at all;A little bit;Somewhat;quite a bit;very much Alphanumeric PhenX Protocol: Quality of Life - Adult (#221302) Adult Proposed 1.00 2019-03-28 11:00:57.0 PhenX Toolkit: Quality of Life - Adult Outcomes and End Points Quality of Life/Patient Reported Outcomes

Single Pre-Defined Value Selected

PhenX Neurology, Quality of Life, and Health Services Specialty Collection Quality of Life - Adult 18
C59243 Feel uneasy past 7 day frequency grade FeelUneasyPst7DyFreqGrade Grade of frequency over the past 7 days that the subject/participant felt uneasy Grade of frequency over the past 7 days that the subject/participant felt uneasy In the past 7 days I felt uneasy Never;Rarely;Sometimes;Often;Always Never;Rarely;Sometimes;Often;Always Alphanumeric PhenX Protocol: Quality of Life - Adult (#221302) Adult Proposed 1.00 2019-03-28 10:10:17.0 PhenX Toolkit: Quality of Life - Adult Outcomes and End Points Quality of Life/Patient Reported Outcomes

Single Pre-Defined Value Selected

PhenX Neurology, Quality of Life, and Health Services Specialty Collection Quality of Life - Adult 8
C59254 Sleep problem past 7 day grade SleepProblemPst7DyGrade Grade of problems with sleep over the past 7 days Grade of problems with sleep over the past 7 days In the past 7 days I had a problem with my sleep Not at all;A little bit;Somewhat;quite a bit;very much Not at all;A little bit;Somewhat;quite a bit;very much Alphanumeric PhenX Protocol: Quality of Life - Adult (#221302) Adult Proposed 1.00 2019-03-28 11:00:57.0 PhenX Toolkit: Quality of Life - Adult Outcomes and End Points Quality of Life/Patient Reported Outcomes

Single Pre-Defined Value Selected

PhenX Neurology, Quality of Life, and Health Services Specialty Collection Quality of Life - Adult 19
29 results.
CSV