CDE Detailed Report
Disease: Sickle Cell Disease
Sub-Domain: Additional Proposed Instruments
CRF: PhenX Toolkit: Quality of Life - Pediatric
Sub-Domain: Additional Proposed Instruments
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 | Domain | CDASH Variable | CDASH Definition | CDASH Label | Controlled Terminology | Prompt | Essentiality | Question Text | CDASH imp guidance | SDTM IG target | csDSR | PhenX | Data Type | CRF Completion Inst | SDTMIG Target Var | SDTMIG Target Map | Codelist Name | PVs | Pre Pop Value | Query Display | List Style |
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| 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 | Additional Proposed Instruments | Phen-X |
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 | Additional Proposed Instruments | Phen-X |
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 | Additional Proposed Instruments | Phen-X |
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 | Additional Proposed Instruments | Phen-X |
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 | Additional Proposed Instruments | Phen-X |
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 | Additional Proposed Instruments | Phen-X |
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 | Additional Proposed Instruments | Phen-X |
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 | Additional Proposed Instruments | Phen-X |
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 | Additional Proposed Instruments | Phen-X |
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 | Additional Proposed Instruments | Phen-X |
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 | Additional Proposed Instruments | Phen-X |
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 | Additional Proposed Instruments | Phen-X |
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 | Additional Proposed Instruments | Phen-X |
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 | Additional Proposed Instruments | Phen-X |
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 | Additional Proposed Instruments | Phen-X |
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 | Additional Proposed Instruments | Phen-X |
Single Pre-Defined Value Selected |
PhenX | Neurology, Quality of Life, and Health Services Specialty Collection | Quality of Life - Pediatric | 2 | ||||||||||||||||||||||||||
| 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 | Additional Proposed Instruments | Phen-X |
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 | Additional Proposed Instruments | Phen-X |
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 | Additional Proposed Instruments | Phen-X |
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 | Additional Proposed Instruments | Phen-X |
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 | Additional Proposed Instruments | Phen-X |
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 | Additional Proposed Instruments | Phen-X |
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 | Additional Proposed Instruments | Phen-X |
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 | Additional Proposed Instruments | Phen-X |
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 | Additional Proposed Instruments | Phen-X |
Single Pre-Defined Value Selected |
PhenX | Neurology, Quality of Life, and Health Services Specialty Collection | Quality of Life - Pediatric | 16 |
25 results.