CDE Detailed Report
Disease: general-data-protection-regulation-gdpr
Sub-Domain: Outcomes and End Points
CRF:

17 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
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 Adult Proposed 1.00 2018-10-24 12:27:41.0 Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) v2.0 Social Functioning - Item Bank Outcomes and End Points Quality of Life/Patient Reported Outcomes

Single Pre-Defined Value Selected

ASCQ-Me v2.0 Social Functioning - Short Form SocialFunctioningQ9
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 Adult Proposed 1.00 2018-10-24 12:27:41.0 Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) v2.0 Social Functioning - Item Bank Outcomes and End Points Quality of Life/Patient Reported Outcomes

Single Pre-Defined Value Selected

ASCQ-Me v2.0 Social Functioning - Short Form SocialFunctioningQ10
C58620 Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) - Not want go out because health past 30 day frequency scale ASCQMeNoWtGoOtBcHthPs30DyFqScl Scale for the frequency in the past 30 days that the subject/participant did not want 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 did not want 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 you feel like not going out because of your health? 5;3;2;1;4 Never;Sometimes;Often;Always;Rarely Numeric Values Adult Proposed 1.00 2018-10-24 12:27:41.0 Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) v2.0 Social Functioning - Item Bank Outcomes and End Points Quality of Life/Patient Reported Outcomes

Single Pre-Defined Value Selected

ASCQ-Me v2.0 Social Functioning SocialFunctioningQ12
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 Adult Proposed 1.00 2018-10-24 12:27:41.0 Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) v2.0 Social Functioning - Item Bank Outcomes and End Points Quality of Life/Patient Reported Outcomes

Single Pre-Defined Value Selected

ASCQ-Me v2.0 Social Functioning - Short Form SocialFunctioningQ15
C58622 Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) - Only activity TV because health past 30 day frequency scale ASCQMeOnlyAcTvBcHthPs30DyFqScl Scale for the frequency in the past 30 days that the subject/participant found the only activity he or she could do was watch TV 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 the only activity he or she could do was watch TV 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 you feel like the only thing you could do was watch TV? 5;3;2;1;4 Never;Sometimes;Often;Always;Rarely Numeric Values Adult Proposed 1.00 2018-10-24 12:27:41.0 Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) v2.0 Social Functioning - Item Bank Outcomes and End Points Quality of Life/Patient Reported Outcomes

Single Pre-Defined Value Selected

ASCQ-Me v2.0 Social Functioning SocialFunctioningQ16
C58612 Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) - Dependent others because health past 30 day frequency scale ASCQMeDpOthBcHlthPst30DyFrqScl Scale for the frequency in the past 30 days that the subject/participant was completely dependent on others 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 completely dependent on others 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 were you completely dependent on others because of your health? 5;3;2;1;4 Never;Sometimes;Often;Always;Rarely Numeric Values Adult Proposed 1.00 2018-10-24 12:27:41.0 Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) v2.0 Social Functioning - Item Bank Outcomes and End Points Quality of Life/Patient Reported Outcomes

Single Pre-Defined Value Selected

ASCQ-Me v2.0 Social Functioning SocialFunctioningQ2
C58623 Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) - Social life suffer because health past 30 day scale ASCQMeSoclLifSufrPst30DayScl Scale for the extent in the past 30 days that the subject/participant's social life suffered 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's social life suffered 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 your social life suffer because of your health? 5;4;3;2;1 Not at all;A little;Somewhat;Quite;Very Numeric Values Adult Proposed 1.00 2018-10-24 12:27:41.0 Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) v2.0 Social Functioning - Item Bank Outcomes and End Points Quality of Life/Patient Reported Outcomes

Single Pre-Defined Value Selected

ASCQ-Me v2.0 Social Functioning SocialFunctioningQ1
C58613 Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) - Health prevent all activity past 30 day frequency scale ASCQMeHthPvtAlActPs30DyFrqScl Scale for the frequency in the past 30 days that the subject/participant was prevented from all activity 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 prevented from all activity 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 doing anything? 5;3;2;1;4 Never;Sometimes;Often;Always;Rarely Numeric Values Adult Proposed 1.00 2018-10-24 12:27:41.0 Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) v2.0 Social Functioning - Item Bank Outcomes and End Points Quality of Life/Patient Reported Outcomes

Single Pre-Defined Value Selected

ASCQ-Me v2.0 Social Functioning SocialFunctioningQ3
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 Adult Proposed 1.00 2018-10-24 12:27:41.0 Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) v2.0 Social Functioning - Item Bank Outcomes and End Points Quality of Life/Patient Reported Outcomes

Single Pre-Defined Value Selected

ASCQ-Me v2.0 Social Functioning - Short Form SocialFunctioningQ7
C58614 Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) - Want be alone because health past 30 day frequency scale ASCQMeWtBeAlnBcHthPs30DyFrqScl Scale for the frequency in the past 30 days that the subject/participant wanted to be alone 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 wanted to be alone 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 you feel like being alone because of your health? 5;3;2;1;4 Never;Sometimes;Often;Always;Rarely Numeric Values Adult Proposed 1.00 2018-10-24 12:27:41.0 Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) v2.0 Social Functioning - Item Bank Outcomes and End Points Quality of Life/Patient Reported Outcomes

Single Pre-Defined Value Selected

ASCQ-Me v2.0 Social Functioning SocialFunctioningQ4
C58625 Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) - Family worry health past 30 day scale ASCQMeFmlyWryHlthPst30DayScl Scale for the extent in the past 30 days that the subject/participant's family worried about 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's family worried about 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 worried was your family about your health? 5;4;3;2;1 Not at all;A little;Somewhat;Quite;Very Numeric Values Adult Proposed 1.00 2018-10-24 12:27:41.0 Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) v2.0 Social Functioning - Item Bank Outcomes and End Points Quality of Life/Patient Reported Outcomes

Single Pre-Defined Value Selected

ASCQ-Me v2.0 Social Functioning SocialFunctioningQ11
C58615 Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) - Health prevent fun activity past 30 day frequency scale ASCQMeHthPvtFnActPs30DyFrqScl Scale for the frequency in the past 30 days that the subject/participant was prevented from doing fun activities 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 prevented from doing fun activities 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 doing something fun? 5;3;2;1;4 Never;Sometimes;Often;Always;Rarely Numeric Values Adult Proposed 1.00 2018-10-24 12:27:41.0 Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) v2.0 Social Functioning - Item Bank Outcomes and End Points Quality of Life/Patient Reported Outcomes

Single Pre-Defined Value Selected

ASCQ-Me v2.0 Social Functioning SocialFunctioningQ5
C58626 Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) - Health hurt social life past 30 day scale ASCQMeHlthHrtSclLifPst30DayScl Scale for the extent in the past 30 days that the subject/participant's health hurt his or her social life, 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 hurt his or her social life, 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 hurt your social life? 5;4;3;2;1 Not at all;A little;Somewhat;Quite;Very Numeric Values Adult Proposed 1.00 2018-10-24 12:27:41.0 Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) v2.0 Social Functioning - Item Bank Outcomes and End Points Quality of Life/Patient Reported Outcomes

Single Pre-Defined Value Selected

ASCQ-Me v2.0 Social Functioning SocialFunctioningQ13
C58616 Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) - Family consider subject burden past 30 day frequency scale ASCQMeFmCsdrSjBdnPs30DyFrqScl Scale for the frequency in the past 30 days that the subject/participant's family considered him or her to be a burden, 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's family considered him or her to be a burden, as part of the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me). In the past 30 days, how often did your family feel like you were a burden? 5;3;2;1;4 Never;Sometimes;Often;Always;Rarely Numeric Values Adult Proposed 1.00 2018-10-24 12:27:41.0 Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) v2.0 Social Functioning - Item Bank Outcomes and End Points Quality of Life/Patient Reported Outcomes

Single Pre-Defined Value Selected

ASCQ-Me v2.0 Social Functioning SocialFunctioningQ6
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 Adult Proposed 1.00 2018-10-24 12:27:41.0 Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) v2.0 Social Functioning - Item Bank Outcomes and End Points Quality of Life/Patient Reported Outcomes

Single Pre-Defined Value Selected

ASCQ-Me v2.0 Social Functioning - Short Form SocialFunctioningQ14
C58617 Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) - Want do nothing because health past 30 day frequency scale ASCQMeWtDoNthBcHthPs30DyFrqScl Scale for the frequency in the past 30 days that the subject/participant wanted to do nothing 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 wanted to do nothing 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 you feel like doing nothing because of your health? 5;3;2;1;4 Never;Sometimes;Often;Always;Rarely Numeric Values Adult Proposed 1.00 2018-10-24 12:27:41.0 Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) v2.0 Social Functioning - Item Bank Outcomes and End Points Quality of Life/Patient Reported Outcomes

Single Pre-Defined Value Selected

ASCQ-Me v2.0 Social Functioning SocialFunctioningQ8
C58628 Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) - Unable join friends because health past 30 day frequency scale ASCQMeUnblJnFrBcHlPs30DyFqScl Scale for the frequency in the past 30 days that the subject/participant's health kept him or her from doing what his or her friends wanted to do, 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's health kept him or her from doing what his or her friends wanted to do, 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 doing what your friend(s) wanted to do? 4;3;2;5;6;1 Sometimes;Often;Always;Rarely;Never;I wasn't with a friend or friends in the past 30 days Numeric Values Adult Proposed 1.00 2018-10-24 12:27:41.0 Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) v2.0 Social Functioning - Item Bank Outcomes and End Points Quality of Life/Patient Reported Outcomes

Single Pre-Defined Value Selected

ASCQ-Me v2.0 Social Functioning SocialFunctioningQ17
17 results.
CSV