CDE Detailed Report
Disease: Sickle Cell Disease
Sub-Domain: Additional Proposed Instruments
CRF: PhenX Toolkit: Quality of Life in Sickle Cell Disease
Sub-Domain: Additional Proposed Instruments
CRF: PhenX Toolkit: Quality of Life in Sickle Cell Disease
30 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 |
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| C58669 | Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) - Fall asleep easy past 7 day frequency scale | ASCQMeFalAslepEasyPs7DyFqScl | Scale for the frequency in the past 7 days that the subject/participant easily fell asleep, as part of the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me). | Scale for the frequency in the past 7 days that the subject/participant easily fell asleep, as part of the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me). | In the past 7 days, how often was it very easy for you to fall asleep? | 5;4;3;2;1 | Always;Often;Sometimes;Rarely;Never | Numeric Values | PhenX Protocol: Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) (#820201) | Adult | Proposed | 1.00 | 2018-10-25 16:53:20.0 | PhenX Toolkit: Quality of Life in Sickle Cell Disease | Additional Proposed Instruments | Phen-X |
Single Pre-Defined Value Selected |
ASCQ-Me | v2.0 | Sleep Impact - Short Form | SleepImpactQ5 | ||||||||||||||||||||||||||
| C58630 | Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) - Joints stiff when awaken past 7 day frequency scale | ASCQMeJtStifWhnAwaknPs7DyFqScl | Scale for the frequency over the past 7 days that the subject/participant's joints were very stiff when he or she awakened, as part of the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me). | Scale for the frequency over the past 7 days that the subject/participant's joints were very stiff when he or she awakened, as part of the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me). | In the past 7 days, how often were your joints very stiff when you woke up? | 5;3;2;1;4 | Never;Sometimes;Often;Always;Rarely | Numeric Values | PhenX Protocol: Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) (#820201) | Adult | Proposed | 1.00 | 2018-10-24 15:27:18.0 | PhenX Toolkit: Quality of Life in Sickle Cell Disease | Additional Proposed Instruments | Phen-X |
Single Pre-Defined Value Selected |
ASCQ-Me | v2.0 | Stiffness Impact - Short Form | StiffImpact03 | ||||||||||||||||||||||||||
| C58650 | Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) - Pain bad unable arise bed past 7 day frequency scale | ASCQMePnBdUnabArsBdPs7DyFrqScl | Scale for the frequency over the past 7 days that the subject/participant had pain so bad that he or she was unable to arise from bed, as part of the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me). | Scale for the frequency over the past 7 days that the subject/participant had pain so bad that he or she was unable to arise from bed, as part of the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me). | In the past 7 days, how often did you have pain so bad that you could not get out of bed? | 5;3;2;1;4 | Never;Sometimes;Often;Always;Rarely | Numeric Values | PhenX Protocol: Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) (#820201) | Adult | Proposed | 1.00 | 2018-10-25 10:42:58.0 | PhenX Toolkit: Quality of Life in Sickle Cell Disease | Additional Proposed Instruments | Phen-X |
Single Pre-Defined Value Selected |
ASCQ-Me | v2.0 | Pain Impact - Short Form | PainImpactQ7 | ||||||||||||||||||||||||||
| C58670 | Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) - Fall asleep difficult past 7 day frequency scale | ASCQMeFalAslepDfctPs7DyFqScl | Scale for the frequency in the past 7 days that the subject/participant had difficulty falling asleep, as part of the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me). | Scale for the frequency in the past 7 days that the subject/participant had difficulty falling asleep, as part of the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me). | In the past 7 days, how often did you have a lot of trouble falling asleep? | 5;3;2;1;4 | Never;Sometimes;Often;Always;Rarely | Numeric Values | PhenX Protocol: Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) (#820201) | Adult | Proposed | 1.00 | 2018-10-25 16:53:20.0 | PhenX Toolkit: Quality of Life in Sickle Cell Disease | Additional Proposed Instruments | Phen-X |
Single Pre-Defined Value Selected |
ASCQ-Me | v2.0 | Sleep Impact - Short Form | SleepImpactQ6 | ||||||||||||||||||||||||||
| C58633 | Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) - Joint very stiff daytime past 7 day frequency scale | ASCQMeJtVrStifDaytimPs7DyFqScl | Scale for the frequency over the past 7 days that the subject/participant's joints were very stiff during the day, as part of the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me). | Scale for the frequency over the past 7 days that the subject/participant's joints were very stiff during the day, as part of the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me). | In the past 7 days, how often were your joints very stiff during the day? | 5;3;2;1;4 | Never;Sometimes;Often;Always;Rarely | Numeric Values | PhenX Protocol: Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) (#820201) | Adult | Proposed | 1.00 | 2018-10-24 15:27:18.0 | PhenX Toolkit: Quality of Life in Sickle Cell Disease | Additional Proposed Instruments | Phen-X |
Single Pre-Defined Value Selected |
ASCQ-Me | v2.0 | Stiffness Impact - Short Form | StiffImpact07 | ||||||||||||||||||||||||||
| C58651 | Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) - Pain severe past 7 day frequency scale | ASCQMePnSeverPs7DyFrqScl | Scale for the frequency over the past 7 days that the subject/participant had severe pain, as part of the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me). | Scale for the frequency over the past 7 days that the subject/participant had severe pain, as part of the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me). | In the past 7 days, how often did you have very severe pain? | 5;3;2;1;4 | Never;Sometimes;Often;Always;Rarely | Numeric Values | PhenX Protocol: Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) (#820201) | Adult | Proposed | 1.00 | 2018-10-25 10:42:58.0 | PhenX Toolkit: Quality of Life in Sickle Cell Disease | Additional Proposed Instruments | Phen-X |
Single Pre-Defined Value Selected |
ASCQ-Me | v2.0 | Pain Impact - Short Form | PainImpactQ8 | ||||||||||||||||||||||||||
| C58671 | Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) - Insomnia all night past 7 day frequency scale | ASCQMeInsmAllNtPs7DyFqScl | Scale for the frequency in the past 7 days that the subject/participant had insomnia for the entire night, as part of the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me). | Scale for the frequency in the past 7 days that the subject/participant had insomnia for the entire night, as part of the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me). | In the past 7 days, how often did you stay up all night because you could not fall asleep? | 5;3;2;1;4 | Never;Sometimes;Often;Always;Rarely | Numeric Values | PhenX Protocol: Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) (#820201) | Adult | Proposed | 1.00 | 2018-10-25 16:53:20.0 | PhenX Toolkit: Quality of Life in Sickle Cell Disease | Additional Proposed Instruments | Phen-X |
Single Pre-Defined Value Selected |
ASCQ-Me | v2.0 | Sleep Impact - Short Form | SleepImpactQ10 | ||||||||||||||||||||||||||
| C58634 | Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) - Unable move because joint stiff daytime past 7 day frequency scale | ASCQMeUnabMovBcJtStfPs7DyFqScl | Scale for the frequency over the past 7 days that the subject/participant was unable to move because of joint stiffness during the day, as part of the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me). | Scale for the frequency over the past 7 days that the subject/participant was unable to move because of joint stiffness during the day, as part of the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me). | In the past 7 days, how often were your joints so stiff during the day that you could not move? | 5;3;2;1;4 | Never;Sometimes;Often;Always;Rarely | Numeric Values | PhenX Protocol: Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) (#820201) | Adult | Proposed | 1.00 | 2018-10-24 15:27:18.0 | PhenX Toolkit: Quality of Life in Sickle Cell Disease | Additional Proposed Instruments | Phen-X |
Single Pre-Defined Value Selected |
ASCQ-Me | v2.0 | Stiffness Impact - Short Form | StiffImpact08 | ||||||||||||||||||||||||||
| C58652 | Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) - Pain bad stop activity past 7 day frequency scale | ASCQMePnBdStopActPs7DyFrqScl | Scale for the frequency over the past 7 days that the subject/participant had pain so bad that he or she had to stop what he or she was doing, as part of the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me). | Scale for the frequency over the past 7 days that the subject/participant had pain so bad that he or she had to stop what he or she was doing, as part of the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me). | In the past 7 days, how often did you have pain so bad that you had to stop what you were doing? | 5;3;2;1;4 | Never;Sometimes;Often;Always;Rarely | Numeric Values | PhenX Protocol: Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) (#820201) | Adult | Proposed | 1.00 | 2018-10-25 10:42:58.0 | PhenX Toolkit: Quality of Life in Sickle Cell Disease | Additional Proposed Instruments | Phen-X |
Single Pre-Defined Value Selected |
ASCQ-Me | v2.0 | Pain Impact - Short Form | PainImpactQ10 | ||||||||||||||||||||||||||
| C58672 | Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) - Insomnia half night past 7 day frequency scale | ASCQMeInsmHlfNtPs7DyFqScl | Scale for the frequency in the past 7 days that the subject/participant had insomnia for half of the night, as part of the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me). | Scale for the frequency in the past 7 days that the subject/participant had insomnia for half of the night, as part of the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me). | In the past 7 days, how often did you stay up half of the night because you could not fall asleep? | 5;3;2;1;4 | Never;Sometimes;Often;Always;Rarely | Numeric Values | PhenX Protocol: Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) (#820201) | Adult | Proposed | 1.00 | 2018-10-25 16:53:20.0 | PhenX Toolkit: Quality of Life in Sickle Cell Disease | Additional Proposed Instruments | Phen-X |
Single Pre-Defined Value Selected |
ASCQ-Me | v2.0 | Sleep Impact - Short Form | SleepImpactQ11 | ||||||||||||||||||||||||||
| C58636 | Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) - Awaken too stiff move past 7 day frequency scale | ASCQMeAwknToStfMovPs7DyFqScl | Scale for the frequency over the past 7 days that the subject/participant awakened too stiff to move, as part of the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me). | Scale for the frequency over the past 7 days that the subject/participant awakened too stiff to move, as part of the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me). | In the past 7 days, how often did you wake up so stiff that you could not move? | 5;3;2;1;4 | Never;Sometimes;Often;Always;Rarely | Numeric Values | PhenX Protocol: Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) (#820201) | Adult | Proposed | 1.00 | 2018-10-24 15:27:18.0 | PhenX Toolkit: Quality of Life in Sickle Cell Disease | Additional Proposed Instruments | Phen-X |
Single Pre-Defined Value Selected |
ASCQ-Me | v2.0 | Stiffness Impact - Short Form | StiffImpact010 | ||||||||||||||||||||||||||
| C58653 | Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) - Pain bad difficult finish activity past 7 day frequency scale | ASCQMePnBdDifFinActPs7DyFrqScl | Scale for the frequency over the past 7 days that the subject/participant had pain so bad that he or she had difficulty finishing what he or she was doing, as part of the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me). | Scale for the frequency over the past 7 days that the subject/participant had pain so bad that he or she had difficulty finishing what he or she was doing, as part of the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me). | In the past 7 days, how often did you have pain so bad that it was hard to finish what you were doing? | 5;3;2;1;4 | Never;Sometimes;Often;Always;Rarely | Numeric Values | PhenX Protocol: Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) (#820201) | Adult | Proposed | 1.00 | 2018-10-25 10:42:58.0 | PhenX Toolkit: Quality of Life in Sickle Cell Disease | Additional Proposed Instruments | Phen-X |
Single Pre-Defined Value Selected |
ASCQ-Me | v2.0 | Pain Impact - Short Form | PainImpactQ12 | ||||||||||||||||||||||||||
| C58639 | Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) - Very long time arise because stiff past 7 day frequency scale | ASCQMeVLgTmArisBcStfPs7DyFqScl | Scale for the frequency over the past 7 days that the subject/participant took a very long time arising from bed because of stiffness, as part of the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me). | Scale for the frequency over the past 7 days that the subject/participant took a very long time arising from bed because of stiffness, as part of the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me). | In the past 7 days, how often did it take you a very long time to get out of bed because of stiffness? | 5;3;2;1;4 | Never;Sometimes;Often;Always;Rarely | Numeric Values | PhenX Protocol: Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) (#820201) | Adult | Proposed | 1.00 | 2018-10-24 15:27:18.0 | PhenX Toolkit: Quality of Life in Sickle Cell Disease | Additional Proposed Instruments | Phen-X |
Single Pre-Defined Value Selected |
ASCQ-Me | v2.0 | Stiffness Impact - Short Form | StiffImpact015 | ||||||||||||||||||||||||||
| C58663 | Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) - Pain episode crisis past 12 month day count code | ASCQMePnEpsdCrsPs12MoDyCtCode | Code for the count of days in the past 12 months on which the subject/participant had a pain episode or crisis, as part of the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me). | Code for the count of days in the past 12 months on which the subject/participant had a pain episode or crisis, as part of the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me). | In the past 12 months, how many sickle cell pain attacks (crises) did you have? | X;1;2;3;4 | I did not have a pain attack (crises) in the past 12 months;1;2;3;4 or more | Alphanumeric | PhenX Protocol: Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) (#820201) | Adult | Proposed | 1.00 | 2018-10-25 16:53:20.0 | PhenX Toolkit: Quality of Life in Sickle Cell Disease | Additional Proposed Instruments | Phen-X |
Single Pre-Defined Value Selected |
ASCQ-Me | v2.0 | Pain Episode Frequency and Severity Measure | PainEpisodeQ1 | ||||||||||||||||||||||||||
| C58644 | Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) - Feel hopeless because health past 7 day frequency scale | ASCQMeFlHoplsBcHlthPs7DyFrqScl | Scale for the frequency over the past 7 days that the subject/participant felt hopeless because of his or her health, as part of the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me). | Scale for the frequency over the past 7 days that the subject/participant felt hopeless because of his or her health, as part of the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me). | In the past 7 days, how often did you feel completely hopeless because of your health? | 5;3;2;1;4 | Never;Sometimes;Often;Always;Rarely | Numeric Values | PhenX Protocol: Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) (#820201) | Adult | Proposed | 1.00 | 2018-10-25 10:42:58.0 | PhenX Toolkit: Quality of Life in Sickle Cell Disease | Additional Proposed Instruments | Phen-X |
Single Pre-Defined Value Selected |
ASCQ-Me | v2.0 | Emotional Impact - Short Form | EmotionalImpactQ11 | ||||||||||||||||||||||||||
| C58664 | Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) - Pain episode crisis last occur time elapse code | ASCQMePnEpsdCrsLsOcTmElpsCode | Code for the time elapsed since the subject/participant last had a pain episode or crisis, as part of the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me). | Code for the time elapsed since the subject/participant last had a pain episode or crisis, as part of the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me). | When was your last pain attack (crisis)? | X;1;2;3;4;5;6;7 | I've never had a pain attack (crises);More than 5 years ago;1-5 years ago;7-11 months ago;1-6 months ago;1-3 weeks ago;Less than a week ago;I have one right now | Alphanumeric | PhenX Protocol: Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) (#820201) | Adult | Proposed | 1.00 | 2018-10-25 16:53:20.0 | PhenX Toolkit: Quality of Life in Sickle Cell Disease | Additional Proposed Instruments | Phen-X |
Single Pre-Defined Value Selected |
ASCQ-Me | v2.0 | Pain Episode Frequency and Severity Measure | PainEpisodeQ2 | ||||||||||||||||||||||||||
| C58618 | Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) - Unable go out because health past 30 day frequency scale | ASCQMeUnabGoOtBcHthPs30DyFqScl | Scale for the frequency in the past 30 days that the subject/participant was unable to go out because of his or her health, as part of the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me). | Scale for the frequency in the past 30 days that the subject/participant was unable to go out because of his or her health, as part of the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me). | In the past 30 days, how often did your health keep you from going out? | 5;3;2;1;4 | Never;Sometimes;Often;Always;Rarely | Numeric Values | PhenX Protocol: Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) (#820201) | Adult | Proposed | 1.00 | 2018-10-24 12:27:41.0 | PhenX Toolkit: Quality of Life in Sickle Cell Disease | Additional Proposed Instruments | Phen-X |
Single Pre-Defined Value Selected |
ASCQ-Me | v2.0 | Social Functioning - Short Form | SocialFunctioningQ9 | ||||||||||||||||||||||||||
| C58645 | Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) - Loneliness because health past 7 day scale | ASCQMeLonlinsBcHlthPs7DyScl | Scale over the past 7 days for the degree of loneliness that the subject/participant felt because of his or her health, as part of the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me). | Scale over the past 7 days for the degree of loneliness that the subject/participant felt because of his or her health, as part of the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me). | In the past 7 days, how lonely did you feel because of your health problems? | 5;4;3;2;1 | Not at all;A little;Somewhat;Quite;Very | Numeric Values | PhenX Protocol: Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) (#820201) | Adult | Proposed | 1.00 | 2018-10-25 10:42:58.0 | PhenX Toolkit: Quality of Life in Sickle Cell Disease | Additional Proposed Instruments | Phen-X |
Single Pre-Defined Value Selected |
ASCQ-Me | v2.0 | Emotional Impact - Short Form | EmotionalImpactQ12 | ||||||||||||||||||||||||||
| C58665 | Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) - Pain episode crisis most recent severity grade | ASCQMePnEpsdCrsMsRctSvrGrade | Grade of pain severity during the subject/participant's most recent pain episode or crisis, as part of the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me). | Grade of pain severity during the subject/participant's most recent pain episode or crisis, as part of the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me). | Using any number from 0 to 10, where 0 is no pain and 10 is the worst pain imaginable, how severe was your pain during your last pain attack (crisis)? | X;0;1;2;3;4;5;6;7;8;9;10 | I've never had a pain attack (crises);No Pain;1;2;3;4;5;6;7;8;9;Worst pain imaginable | Alphanumeric | PhenX Protocol: Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) (#820201) | Adult | Proposed | 1.00 | 2018-10-25 16:53:20.0 | PhenX Toolkit: Quality of Life in Sickle Cell Disease | Additional Proposed Instruments | Phen-X |
Single Pre-Defined Value Selected |
ASCQ-Me | v2.0 | Pain Episode Frequency and Severity Measure | PainEpisodeQ3 | ||||||||||||||||||||||||||
| C58619 | Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) - Slow down because health past 30 day frequency scale | ASCQMeSloDnBcHthPs30DyFqScl | Scale for the frequency in the past 30 days that the subject/participant felt slowed down because of his or her health, as part of the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me). | Scale for the frequency in the past 30 days that the subject/participant felt slowed down because of his or her health, as part of the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me). | In the past 30 days, how often did your health slow you down? | 5;3;2;1;4 | Never;Sometimes;Often;Always;Rarely | Numeric Values | PhenX Protocol: Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) (#820201) | Adult | Proposed | 1.00 | 2018-10-24 12:27:41.0 | PhenX Toolkit: Quality of Life in Sickle Cell Disease | Additional Proposed Instruments | Phen-X |
Single Pre-Defined Value Selected |
ASCQ-Me | v2.0 | Social Functioning - Short Form | SocialFunctioningQ10 | ||||||||||||||||||||||||||
| C58646 | Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) - Depression about health past 7 day scale | ASCQMeDeprsnAbtHlthPs7DyScl | Scale over the past 7 days for the degree to which the subject/participant felt depressed because of his or her health, as part of the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me). | Scale over the past 7 days for the degree to which the subject/participant felt depressed because of his or her health, as part of the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me). | In the past 7 days, how depressed were you about your health problems? | 5;4;3;2;1 | Not at all;A little;Somewhat;Quite;Very | Numeric Values | PhenX Protocol: Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) (#820201) | Adult | Proposed | 1.00 | 2018-10-25 10:42:58.0 | PhenX Toolkit: Quality of Life in Sickle Cell Disease | Additional Proposed Instruments | Phen-X |
Single Pre-Defined Value Selected |
ASCQ-Me | v2.0 | Emotional Impact - Short Form | EmotionalImpactQ16 | ||||||||||||||||||||||||||
| C58666 | Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) - Pain episode crisis most recent interfere life code | ASCQMePnEpsdCrsMsRctIfrLifCode | Code for the extent to which the subject/participant's most recent pain episode or crisis interfered with his or her life, as part of the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me). | Code for the extent to which the subject/participant's most recent pain episode or crisis interfered with his or her life, as part of the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me). | How much did your last pain attack (crisis) interfere with your life? | X;1;2;3;4;5 | I've never had a pain attack (crises);Not at all, I did everything I usually do;I had to cut down on some things I usually do;I could not do most things I usually do;I could not take care of myself and needed some help from family or friends;I could not take care of myself and needed constant care from family, friends, doctors, or nurses | Alphanumeric | PhenX Protocol: Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) (#820201) | Adult | Proposed | 1.00 | 2018-10-25 16:53:20.0 | PhenX Toolkit: Quality of Life in Sickle Cell Disease | Additional Proposed Instruments | Phen-X |
Single Pre-Defined Value Selected |
ASCQ-Me | v2.0 | Pain Episode Frequency and Severity Measure | PainEpisodeQ4 | ||||||||||||||||||||||||||
| C58621 | Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) - Activity difficult because health past 30 day frequency scale | ASCQMeActDfcltBcHthPs30DyFqScl | Scale for the frequency in the past 30 days that the subject/participant found it difficult to do things because of his or her health, as part of the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me). | Scale for the frequency in the past 30 days that the subject/participant found it difficult to do things because of his or her health, as part of the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me). | In the past 30 days, how often did your health make it hard for you to do things? | 5;3;2;1;4 | Never;Sometimes;Often;Always;Rarely | Numeric Values | PhenX Protocol: Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) (#820201) | Adult | Proposed | 1.00 | 2018-10-24 12:27:41.0 | PhenX Toolkit: Quality of Life in Sickle Cell Disease | Additional Proposed Instruments | Phen-X |
Single Pre-Defined Value Selected |
ASCQ-Me | v2.0 | Social Functioning - Short Form | SocialFunctioningQ15 | ||||||||||||||||||||||||||
| C58647 | Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) - Worry about become sick past 7 day scale | ASCQMeWryAbtBcmSickPs7DyScl | Scale over the past 7 days for the degree to which the subject/participant worried about becoming sick, as part of the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me). | Scale over the past 7 days for the degree to which the subject/participant worried about becoming sick, as part of the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me). | In the past 7 days, how much did you worry about getting sick? | 5;4;3;2;1 | Not at all;A little bit;Somewhat;Quite a bit;Very much | Numeric Values | PhenX Protocol: Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) (#820201) | Adult | Proposed | 1.00 | 2018-10-25 10:42:58.0 | PhenX Toolkit: Quality of Life in Sickle Cell Disease | Additional Proposed Instruments | Phen-X |
Single Pre-Defined Value Selected |
ASCQ-Me | v2.0 | Emotional Impact - Short Form | EmotionalImpactQ9 | ||||||||||||||||||||||||||
| C58667 | Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) - Pain episode crisis most recent duration code | ASCQMePnEpsdCrsMsRctDurCode | Code for the duration of the subject/participant's most recent pain episode or crisis, as part of the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me). | Code for the duration of the subject/participant's most recent pain episode or crisis, as part of the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me). | About how long did your most recent pain attack (crisis) last? | 1;2;3;4;5;6;7;X | Less than 1 hour;1-12 hours;13-23 hours;1-3 days;4-6 days;1-2 weeks;More than 2 weeks;I've never had a pain attack (crises) | Alphanumeric | PhenX Protocol: Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) (#820201) | Adult | Proposed | 1.00 | 2018-10-25 16:53:20.0 | PhenX Toolkit: Quality of Life in Sickle Cell Disease | Additional Proposed Instruments | Phen-X |
Single Pre-Defined Value Selected |
ASCQ-Me | v2.0 | Pain Episode Frequency and Severity Measure | PainEpisodeQ5 | ||||||||||||||||||||||||||
| C58624 | Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) - Rely other for care because health past 30 day scale | ASCQMeRlyOthFrCrPst30DayScl | Scale for the extent in the past 30 days that the subject/participant relied on others for care because of his or her health, as part of the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me). | Scale for the extent in the past 30 days that the subject/participant relied on others for care because of his or her health, as part of the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me). | In the past 30 days, how much did you rely on others to take care of you because of your health? | 5;4;3;2;1 | Not at all;A little;Somewhat;Quite;Very | Numeric Values | PhenX Protocol: Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) (#820201) | Adult | Proposed | 1.00 | 2018-10-24 12:27:41.0 | PhenX Toolkit: Quality of Life in Sickle Cell Disease | Additional Proposed Instruments | Phen-X |
Single Pre-Defined Value Selected |
ASCQ-Me | v2.0 | Social Functioning - Short Form | SocialFunctioningQ7 | ||||||||||||||||||||||||||
| C58648 | Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) - Worry hospital need go past 7 day frequency scale | ASCQMeWryHsptlNedGoPs7DyFrqScl | Scale for the frequency over the past 7 days that the subject/participant was very worried about needing to go to the hospital, as part of the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me). | Scale for the frequency over the past 7 days that the subject/participant was very worried about needing to go to the hospital, as part of the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me). | In the past 7 days, how often were you very worried about needing to go to the hospital? | 5;3;2;1;4 | Never;Sometimes;Often;Always;Rarely | Numeric Values | PhenX Protocol: Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) (#820201) | Adult | Proposed | 1.00 | 2018-10-25 10:42:58.0 | PhenX Toolkit: Quality of Life in Sickle Cell Disease | Additional Proposed Instruments | Phen-X |
Single Pre-Defined Value Selected |
ASCQ-Me | v2.0 | Emotional Impact - Short Form | EmotionalImpactQ17 | ||||||||||||||||||||||||||
| C58668 | Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) - Insomnia most of night past 7 day frequency scale | ASCQMeInsmMstOfNtPs7DyFqScl | Scale for the frequency in the past 7 days that the subject/participant had insomnia for most of the night, as part of the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me). | Scale for the frequency in the past 7 days that the subject/participant had insomnia for most of the night, as part of the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me). | In the past 7 days, how often did you stay up most of the night because you could not fall asleep? | 5;3;2;1;4 | Never;Sometimes;Often;Always;Rarely | Numeric Values | PhenX Protocol: Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) (#820201) | Adult | Proposed | 1.00 | 2018-10-25 16:53:20.0 | PhenX Toolkit: Quality of Life in Sickle Cell Disease | Additional Proposed Instruments | Phen-X |
Single Pre-Defined Value Selected |
ASCQ-Me | v2.0 | Sleep Impact - Short Form | SleepImpactQ2 | ||||||||||||||||||||||||||
| C58627 | Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) - Difficult engage friends because health past 30 day scale | ASCQMeDfcEngFrBcHthPst30DayScl | Scale for the extent in the past 30 days that the subject/participant's health made it difficult for him or her to do things with his or her friends, as part of the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me). | Scale for the extent in the past 30 days that the subject/participant's health made it difficult for him or her to do things with his or her friends, as part of the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me). | In the past 30 days, how much did your health make it hard for you to do things with your friends? | 5;4;3;2;1 | Not at all;A little;Somewhat;Quite;Very | Numeric Values | PhenX Protocol: Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) (#820201) | Adult | Proposed | 1.00 | 2018-10-24 12:27:41.0 | PhenX Toolkit: Quality of Life in Sickle Cell Disease | Additional Proposed Instruments | Phen-X |
Single Pre-Defined Value Selected |
ASCQ-Me | v2.0 | Social Functioning - Short Form | SocialFunctioningQ14 | ||||||||||||||||||||||||||
| C58649 | Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) - Pain bad no activity entire day past 7 day frequency scale | ASCQMePnBdNoActEnDyPs7DyFrqScl | Scale for the frequency over the past 7 days that the subject/participant had pain so bad that he or she was unable to engage in any activity for the entire day, as part of the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me). | Scale for the frequency over the past 7 days that the subject/participant had pain so bad that he or she was unable to engage in any activity for the entire day, as part of the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me). | In the past 7 days, how often did you have pain so bad that you could not do anything for a whole day? | 5;3;2;1;4 | Never;Sometimes;Often;Always;Rarely | Numeric Values | PhenX Protocol: Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) (#820201) | Adult | Proposed | 1.00 | 2018-10-25 10:42:58.0 | PhenX Toolkit: Quality of Life in Sickle Cell Disease | Additional Proposed Instruments | Phen-X |
Single Pre-Defined Value Selected |
ASCQ-Me | v2.0 | Pain Impact - Short Form | PainImpactQ2 |
30 results.