CDE Detailed Report
Disease: Sickle Cell Disease
Sub-Domain: Outcomes and End Points
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
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 Outcomes and End Points Patient Reported Outcomes

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 Outcomes and End Points Patient Reported Outcomes

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 Outcomes and End Points Patient Reported Outcomes

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 Outcomes and End Points Patient Reported Outcomes

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 Outcomes and End Points Patient Reported Outcomes

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 Outcomes and End Points Patient Reported Outcomes

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 Outcomes and End Points Patient Reported Outcomes

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 Outcomes and End Points Patient Reported Outcomes

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 Outcomes and End Points Patient Reported Outcomes

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 Outcomes and End Points Patient Reported Outcomes

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 Outcomes and End Points Patient Reported Outcomes

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 Outcomes and End Points Patient Reported Outcomes

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 Outcomes and End Points Patient Reported Outcomes

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 Outcomes and End Points Patient Reported Outcomes

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 Outcomes and End Points Patient Reported Outcomes

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 Outcomes and End Points Patient Reported Outcomes

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 Outcomes and End Points Patient Reported Outcomes

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 Outcomes and End Points Patient Reported Outcomes

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 Outcomes and End Points Patient Reported Outcomes

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 Outcomes and End Points Patient Reported Outcomes

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 Outcomes and End Points Patient Reported Outcomes

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 Outcomes and End Points Patient Reported Outcomes

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 Outcomes and End Points Patient Reported Outcomes

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 Outcomes and End Points Patient Reported Outcomes

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 Outcomes and End Points Patient Reported Outcomes

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 Outcomes and End Points Patient Reported Outcomes

Single Pre-Defined Value Selected

ASCQ-Me v2.0 Pain Impact - Short Form PainImpactQ2
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 Outcomes and End Points Patient Reported Outcomes

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 Outcomes and End Points Patient Reported Outcomes

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 Outcomes and End Points Patient Reported Outcomes

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 Outcomes and End Points Patient Reported Outcomes

Single Pre-Defined Value Selected

ASCQ-Me v2.0 Sleep Impact - Short Form SleepImpactQ6
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