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

25 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
C59223 Fatigue interfere schoolwork past 7 day frequency code FtgIntrfrSchlwkPst7DyFreqCode Code for the frequency over the past 7 days that the subject/participant had fatigue that interfered with his or her schoolwork Code for the frequency over the past 7 days that the subject/participant had fatigue that interfered with his or her schoolwork In the past 7 days being tired made it hard for me to keep up with my schoolwork 0;1;2;3;4 Never;Almost never;Sometimes;Often;Almost Always Numeric Values PhenX Protocol: Quality of Life - Pediatric (#221301) Pediatric Proposed 1.00 2019-03-27 13:55:37.0 PhenX Toolkit: Quality of Life - Pediatric 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 13
C59234 Pain interfere wallking past 7 day frequency code PainIntrfrWalkPst7DyFrqCode Code for the frequency over the past 7 days that the subject/participant's pain interfered with his or her ability to walk very far Code for the frequency over the past 7 days that the subject/participant's pain interfered with his or her ability to walk very far In the past 7 days it was hard for me to walk one block when I had pain 0;1;2;3;4 Never;Almost never;Sometimes;Often;Almost Always Numeric Values PhenX Protocol: Quality of Life - Pediatric (#221301) Pediatric Proposed 1.00 2019-03-27 13:55:37.0 PhenX Toolkit: Quality of Life - Pediatric 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 24
C59209 Climb stairs unassist past 7 day difficulty code ClmbStairUnastPst7DyDifcltCode Code denoting the difficulty that the subject/participant has had in the past 7 days climbing stairs unassisted Code denoting the difficulty that the subject/participant has had in the past 7 days climbing stairs unassisted In the past 7 days I could walk up stairs without holding on to anything 1;2;3;4;0 With a lot of trouble;With some trouble;With a little trouble;With no trouble;Not able to do Numeric Values PhenX Protocol: Quality of Life - Pediatric (#221301) Pediatric Proposed 1.00 2019-03-27 13:13:25.0 PhenX Toolkit: Quality of Life - Pediatric 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 3
C59224 Tire easily past 7 day frequency code TireEasilyPst7DyFreqCode Code for the frequency over the past 7 days that the subject/participant tired easily Code for the frequency over the past 7 days that the subject/participant tired easily In the past 7 days I got tired easily 0;1;2;3;4 Never;Almost never;Sometimes;Often;Almost Always Numeric Values PhenX Protocol: Quality of Life - Pediatric (#221301) Pediatric Proposed 1.00 2019-03-27 13:55:37.0 PhenX Toolkit: Quality of Life - Pediatric 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 14
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 bad was 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 - Pediatric (#221301) Pediatric Proposed 1.00 2019-03-27 15:01:10.0 PhenX Toolkit: Quality of Life - Pediatric 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
C59210 Do activities enjoy past 7 day difficulty code DoActivtyEnjyPst7DyDifcltCode Code denoting the difficulty that the subject/participant has had in the past 7 days physically doing the activities he or she most enjoys Code denoting the difficulty that the subject/participant has had in the past 7 days physically doing the activities he or she most enjoys In the past 7 days I have been physically able to do the activities I enjoy most 1;2;3;4;0 With a lot of trouble;With some trouble;With a little trouble;With no trouble;Not able to do Numeric Values PhenX Protocol: Quality of Life - Pediatric (#221301) Pediatric Proposed 1.00 2019-03-27 13:13:25.0 PhenX Toolkit: Quality of Life - Pediatric 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 4
C59225 Fatigue interfere sport exercise past 7 day frequency code FtgIntrfrSptExrcsPst7DyFrqCode Code for the frequency over the past 7 days that the subject/participant had fatigue that interfered with sports or exercise Code for the frequency over the past 7 days that the subject/participant had fatigue that interfered with sports or exercise In the past 7 days I was too tired to do sports or exercise 0;1;2;3;4 Never;Almost never;Sometimes;Often;Almost Always Numeric Values PhenX Protocol: Quality of Life - Pediatric (#221301) Pediatric Proposed 1.00 2019-03-27 13:55:37.0 PhenX Toolkit: Quality of Life - Pediatric 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 15
C59212 Feel dread past 7 day frequency code FeelDreadPst7DyFreqCode Code for the frequency over the past 7 days that the subject/participant had unspecified feelings of dread Code for the frequency over the past 7 days that the subject/participant had unspecified feelings of dread In the past 7 days I felt like something awful might happen 0;1;2;3;4 Never;Almost never;Sometimes;Often;Almost Always Numeric Values PhenX Protocol: Quality of Life - Pediatric (#221301) Pediatric Proposed 1.00 2019-03-27 13:48:05.0 PhenX Toolkit: Quality of Life - Pediatric 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 5
C59226 Fatigue interfere enjoyment past 7 day frequency code FtgIntrfrEnjymntPst7DyFrqCode Code for the frequency over the past 7 days that the subject/participant had fatigue that interfered his or her enjoyment of activities Code for the frequency over the past 7 days that the subject/participant had fatigue that interfered his or her enjoyment of activities In the past 7 days I was too tired to enjoy the things I like to do 0;1;2;3;4 Never;Almost never;Sometimes;Often;Almost Always Numeric Values PhenX Protocol: Quality of Life - Pediatric (#221301) Pediatric Proposed 1.00 2019-03-27 13:55:37.0 PhenX Toolkit: Quality of Life - Pediatric 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 16
C59214 Feel nervous past 7 day frequency code FeelNrvsPst7DyFreqCode Code for the frequency over the past 7 days that the subject/participant felt nervous Code for the frequency over the past 7 days that the subject/participant felt nervous In the past 7 days I felt nervous 0;1;2;3;4 Never;Almost never;Sometimes;Often;Almost Always Numeric Values PhenX Protocol: Quality of Life - Pediatric (#221301) Pediatric Proposed 1.00 2019-03-27 13:55:37.0 PhenX Toolkit: Quality of Life - Pediatric 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 6
C59227 Feel accepted by peers past 7 day frequency code FeelAcceptByPeerPst7DyFrqCode Code for the frequency over the past 7 days that the subject/participant felt accepted by his or her peers Code for the frequency over the past 7 days that the subject/participant felt accepted by his or her peers In the past 7 days I felt accepted by other kids my age 0;1;2;3;4 Never;Almost never;Sometimes;Often;Almost Always Numeric Values PhenX Protocol: Quality of Life - Pediatric (#221301) Pediatric Proposed 1.00 2019-03-27 13:55:37.0 PhenX Toolkit: Quality of Life - Pediatric 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 17
C59216 Feel worried past 7 day frequency code FeelWorriedPst7DyFreqCode Code for the frequency over the past 7 days that the subject/participant felt worried Code for the frequency over the past 7 days that the subject/participant felt worried In the past 7 days I felt worried 0;1;2;3;4 Never;Almost never;Sometimes;Often;Almost Always Numeric Values PhenX Protocol: Quality of Life - Pediatric (#221301) Pediatric Proposed 1.00 2019-03-27 13:55:37.0 PhenX Toolkit: Quality of Life - Pediatric 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 7
C59228 Able rely friends past 7 day frequency code AbleRelyFriendPst7DyFrqCode Code for the frequency over the past 7 days that the subject/participant was able to rely on his or her friends Code for the frequency over the past 7 days that the subject/participant was able to rely on his or her friends In the past 7 days I was able to count on my friends 0;1;2;3;4 Never;Almost never;Sometimes;Often;Almost Always Numeric Values PhenX Protocol: Quality of Life - Pediatric (#221301) Pediatric Proposed 1.00 2019-03-27 13:55:37.0 PhenX Toolkit: Quality of Life - Pediatric 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 18
C59218 Feel worried at home past 7 day frequency code FeelWrrdAtHomPst7DyFreqCode Code for the frequency over the past 7 days that the subject/participant felt worried while at home Code for the frequency over the past 7 days that the subject/participant felt worried while at home In the past 7 days I worried when I was at home 0;1;2;3;4 Never;Almost never;Sometimes;Often;Almost Always Numeric Values PhenX Protocol: Quality of Life - Pediatric (#221301) Pediatric Proposed 1.00 2019-03-27 13:55:37.0 PhenX Toolkit: Quality of Life - Pediatric 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 8
C59229 Help friends past 7 day frequency code HelpFriendPst7DyFrqCode Code for the frequency over the past 7 days that the subject/participant and his/her friends helped one another Code for the frequency over the past 7 days that the subject/participant and his/her friends helped one another In the past 7 days my friends and I helped each other out 0;1;2;3;4 Never;Almost never;Sometimes;Often;Almost Always Numeric Values PhenX Protocol: Quality of Life - Pediatric (#221301) Pediatric Proposed 1.00 2019-03-27 13:55:37.0 PhenX Toolkit: Quality of Life - Pediatric 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 19
C59219 Feel whole life gone wrong past 7 day frequency code FlWholLifGoWrngPst7DyFreqCode Code for the frequency over the past 7 days that the subject/participant felt everything in his or her life went wrong Code for the frequency over the past 7 days that the subject/participant felt everything in his or her life went wrong In the past 7 days I felt everything in my life went wrong 0;1;2;3;4 Never;Almost never;Sometimes;Often;Almost Always Numeric Values PhenX Protocol: Quality of Life - Pediatric (#221301) Pediatric Proposed 1.00 2019-03-27 13:55:37.0 PhenX Toolkit: Quality of Life - Pediatric 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 9
C59230 Others seek friendship past 7 day frequency code OthrSeekFrndshpPst7DyFrqCode Code for the frequency over the past 7 days that the subject/participant's friendship was sought by others Code for the frequency over the past 7 days that the subject/participant's friendship was sought by others In the past 7 days other kids wanted to be my friend 0;1;2;3;4 Never;Almost never;Sometimes;Often;Almost Always Numeric Values PhenX Protocol: Quality of Life - Pediatric (#221301) Pediatric Proposed 1.00 2019-03-27 13:55:37.0 PhenX Toolkit: Quality of Life - Pediatric 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 20
C59220 Feel lonely past 7 day frequency code FeelLonelyPst7DyFreqCode Code for the frequency over the past 7 days that the subject/participant felt lonely Code for the frequency over the past 7 days that the subject/participant felt lonely In the past 7 days I felt lonely 0;1;2;3;4 Never;Almost never;Sometimes;Often;Almost Always Numeric Values PhenX Protocol: Quality of Life - Pediatric (#221301) Pediatric Proposed 1.00 2019-03-27 13:55:37.0 PhenX Toolkit: Quality of Life - Pediatric 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 10
C59231 Pain interfere sleep past 7 day frequency code PainIntrfrSleepPst7DyFrqCode Code for the frequency over the past 7 days that the subject/participant's pain interfered with his or her sleep Code for the frequency over the past 7 days that the subject/participant's pain interfered with his or her sleep In the past 7 days I had trouble sleeping when I had pain 0;1;2;3;4 Never;Almost never;Sometimes;Often;Almost Always Numeric Values PhenX Protocol: Quality of Life - Pediatric (#221301) Pediatric Proposed 1.00 2019-03-27 13:55:37.0 PhenX Toolkit: Quality of Life - Pediatric 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 21
C59221 Feel sad past 7 day frequency code FeelSadPst7DyFreqCode Code for the frequency over the past 7 days that the subject/participant felt sad Code for the frequency over the past 7 days that the subject/participant felt sad In the past 7 days I felt sad 0;1;2;3;4 Never;Almost never;Sometimes;Often;Almost Always Numeric Values PhenX Protocol: Quality of Life - Pediatric (#221301) Pediatric Proposed 1.00 2019-03-27 13:55:37.0 PhenX Toolkit: Quality of Life - Pediatric 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 11
C59232 Pain interfere attention past 7 day frequency code PainIntrfrAttnPst7DyFrqCode Code for the frequency over the past 7 days that the subject/participant's pain interfered with his or her attention Code for the frequency over the past 7 days that the subject/participant's pain interfered with his or her attention In the past 7 days it was hard for me to pay attention when I had pain 0;1;2;3;4 Never;Almost never;Sometimes;Often;Almost Always Numeric Values PhenX Protocol: Quality of Life - Pediatric (#221301) Pediatric Proposed 1.00 2019-03-27 13:55:37.0 PhenX Toolkit: Quality of Life - Pediatric 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 22
C59207 Sport exercise past 7 day difficulty code SprtExrcsPst7DyDiffcltCode Code denoting the difficulty that the subject/participant has had in the past 7 days doing the same sports and exercise as his or her peers Code denoting the difficulty that the subject/participant has had in the past 7 days doing the same sports and exercise as his or her peers In the past 7 days I could do sports and exercise that other kids my age could do 1;2;3;4;0 With a lot of trouble;With some trouble;With a little trouble;With no trouble;Not able to do Numeric Values PhenX Protocol: Quality of Life - Pediatric (#221301) Pediatric Proposed 1.00 2019-03-27 13:13:25.0 PhenX Toolkit: Quality of Life - Pediatric 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 1
C59222 Difficult have fun past 7 day frequency code DffcltHvFunPst7DyFreqCode Code for the frequency over the past 7 days that the subject/participant had difficulty having fun Code for the frequency over the past 7 days that the subject/participant had difficulty having fun In the past 7 days it was hard for me to have fun 0;1;2;3;4 Never;Almost never;Sometimes;Often;Almost Always Numeric Values PhenX Protocol: Quality of Life - Pediatric (#221301) Pediatric Proposed 1.00 2019-03-27 13:55:37.0 PhenX Toolkit: Quality of Life - Pediatric 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 12
C59233 Pain interfere running past 7 day frequency code PainIntrfrRunPst7DyFrqCode Code for the frequency over the past 7 days that the subject/participant's pain interfered with his or her ability to run Code for the frequency over the past 7 days that the subject/participant's pain interfered with his or her ability to run In the past 7 days it was hard for me to run when I had pain 0;1;2;3;4 Never;Almost never;Sometimes;Often;Almost Always Numeric Values PhenX Protocol: Quality of Life - Pediatric (#221301) Pediatric Proposed 1.00 2019-03-27 13:55:37.0 PhenX Toolkit: Quality of Life - Pediatric 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 23
C59208 Rise from floor past 7 day difficulty code RisFromFloorPst7DyDiffcltCode Code denoting the difficulty that the subject/participant has had in the past 7 days rising from the floor Code denoting the difficulty that the subject/participant has had in the past 7 days rising from the floor In the past 7 days I could get up from the floor 1;2;3;4;0 With a lot of trouble;With some trouble;With a little trouble;With no trouble;Not able to do Numeric Values PhenX Protocol: Quality of Life - Pediatric (#221301) Pediatric Proposed 1.00 2019-03-27 13:13:25.0 PhenX Toolkit: Quality of Life - Pediatric 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 2
25 results.
CSV