CDE Detailed Report
Disease: Sickle Cell Disease
Sub-Domain: Additional Proposed Instruments
CRF: Miscellaneous Sickle Cell-related CDEs

491 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
C21507 Wechsler Adult Intelligence Scale IV (WAIS IV) - Digit span subtest total raw score WAISIVDSTtlScore Total score, as part of Wechsler Adult Intelligence Scale IV (WAIS IV) Digit Span subtest Total score, as part of Wechsler Adult Intelligence Scale IV (WAIS IV) Digit Span subtest Numeric Values Adult;Pediatric Supplemental 1.00 2015-07-22 11:32:44.0 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

Free-Form Entry

0 48
C13459 Pediatric Stroke Outcomes Measure-Neuro Exam (PSOM-SNEVOct2003) - language deficit-production description text PSOMSNELangDefProdDescTxt Description of the language production deficits observed in the participant/subject based on Pediatric Stroke Outcomes Measure-Neuro Exam (PSOM-SNEVOct2003). Description of the language production deficits observed in the participant/subject based on Pediatric Stroke Outcomes Measure-Neuro Exam (PSOM-SNEVOct2003). Alphanumeric Adult;Pediatric Supplemental 3.00 2013-06-21 00:00:00.0 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other 255

Free-Form Entry

DeBaun Forms
C14027 Intracranial pressure (ICP) other measurement text ICPOtherMeasrTxt Indicates other method of measuring intracranial pressure (ICP) Indicates other method of measuring intracranial pressure (ICP) Alphanumeric Adult;Pediatric Supplemental 3.00 2013-06-21 00:00:00.0 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other 255

Free-Form Entry

C18719 Imaging slice orientation other text ImgSliceOrientOTH The free-text field related to 'Imaging slice orientation type' specifying other text. The slice orientation used in imaging acquisition The free-text field related to 'Imaging slice orientation type' specifying other text. The slice orientation used in imaging acquisition Alphanumeric Adult;Pediatric Supplemental 1.00 2014-05-27 13:34:46.0 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other 4000

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C12468 Imaging magnetic resonance imaging performed multiple count ImgMRIPerfMultiCt The count representing of the number of magnetic resonance imaging (MRI) sessions performed on the participant/subject The count representing of the number of magnetic resonance imaging (MRI) sessions performed on the participant/subject 2;3;4;5;6;>6;2;3;4;5;6;>6 2;3;4;5;6;>6;2;3;4;5;6;>6 Alphanumeric Adult;Pediatric Supplemental 3.00 2013-07-24 11:38:01.2 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

Single Pre-Defined Value Selected

C13924 Imaging vertebral origin result ImgVertebralOriginReslt Indicates vertebral origin Indicates vertebral origin Normal;Stenosis;Occluded Normal;Stenosis;Occluded Alphanumeric Adult;Pediatric Supplemental 3.00 2013-06-21 00:00:00.0 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

Single Pre-Defined Value Selected

C55779 Imaging automated evaluation vascular MRI data indicator ImagAutoEvalVasMRIDataInd The indicator relating to whether or not an automated evaluation of vascular magnetic resonance imaging (MRI) data has been given. The indicator relating to whether or not an automated evaluation of vascular magnetic resonance imaging (MRI) data has been given. No;Yes No;Yes Alphanumeric Adult;Pediatric Supplemental 1.00 2017-05-31 12:26:23.0 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

Single Pre-Defined Value Selected

C15555 Imaging visual analysis performed indicator ImgVisAnlysisPerfrmInd Whether visual analysis was performed while blind to clinical data Whether visual analysis was performed while blind to clinical data Yes;No;Unknown Yes;No;Unknown Alphanumeric Adult;Pediatric Supplemental 3.00 2013-07-16 14:01:43.01 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

Single Pre-Defined Value Selected

C01535 Respiratory rate RespRate Rate of the participant/subject's breathing (inhalation and exhalation). Rate of the participant/subject's breathing (inhalation and exhalation). Numeric Values Adult;Pediatric Supplemental 3.00 2013-08-28 16:08:00.453 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

Free-Form Entry

0 120 breaths per minute 2644399 DeBaun Forms
C19840 Medical history medication change since last visit indicator MedHistMedctnChngeSLVInd Indicator of medication changes since last study visit Indicator of medication changes since last study visit No;Yes No;Yes Alphanumeric Adult;Pediatric Supplemental 1.00 2015-02-06 00:00:00.0 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

Single Pre-Defined Value Selected

DeBaun Forms
C21486 Wechsler Adult Intelligence Scale IV (WAIS IV) - Digit span forward subtest trial number WAISIVDSFTrialNum Trial number, as part of Wechsler Adult Intelligence Scale IV (WAIS IV) Digit Span Forward subtest Trial number, as part of Wechsler Adult Intelligence Scale IV (WAIS IV) Digit Span Forward subtest 1;2 Trial 1;Trial 2 Numeric Values Adult;Pediatric Supplemental 1.00 2015-07-22 11:32:44.0 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

Single Pre-Defined Value Selected

C13199 Questionnaire for Verifying Stroke Free Status (QVSFS) - verbal status QVSFSVerbalStatus Have you ever suddenly lost the ability to express yourself verbally or in writing? Have you ever suddenly lost the ability to express yourself verbally or in writing? Questionnaire for Verifying Stroke Free Status (QVSFS) No;Yes No;Yes Alphanumeric Adult;Pediatric Supplemental 3.00 2013-06-21 00:00:00.0 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

Single Pre-Defined Value Selected

DeBaun Forms
C14005 Imaging brain death diagnosis result ImgBrainDeathDiagReslt Indicates brain death diagnosis result Indicates brain death diagnosis result Reversed Diastolic Flow;Systolic spike;No signals Reversed Diastolic Flow;Systolic spike;No signals Alphanumeric Adult;Pediatric Supplemental 3.00 2013-06-21 00:00:00.0 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

Multiple Pre-Defined Values Selected

C56431 Wechsler Abbreviated Scale of Intelligence - Second Edition (WASI-II) - Perceptual Reasoning confidence interval lower bound value WASIIIPercRsngConfIntrvlLowVal The lower bound of the subject's Perceptual Reasoning confidence interval, as part of the Wechsler Abbreviated Scale of Intelligence - Second Edition (WASI-II). The lower bound of the subject's Perceptual Reasoning confidence interval, as part of the Wechsler Abbreviated Scale of Intelligence - Second Edition (WASI-II). Numeric Values Adult;Pediatric Supplemental 1.00 2017-06-12 12:55:22.0 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

Free-Form Entry

C08242 Imaging acquisition duration ImgAcquisitionDur Duration of the imaging scan in minutes The duration of the imaging acquisition, in minutes Numeric Values Adult;Pediatric Supplemental 3.00 2013-07-24 11:38:01.2 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

Free-Form Entry

minute
C13903 Imaging interpretation site indicator ImgInterpretSiteInd Indicates imaging interpretation site Indicates imaging interpretation site Onsite;Offsite Onsite;Offsite Alphanumeric Adult;Pediatric Supplemental 3.00 2013-06-21 00:00:00.0 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

Single Pre-Defined Value Selected

C54609 Brief Test of Executive Function Second Edition (BRIEF 2) - Emotional control total raw scale score BRIEF2EmtnlCntrlTtlRwSclScore Total score of the raw scale for the emotional control function, as part of the Brief Test of Executive Function Second Edition (BRIEF 2) Total score of the raw scale for the emotional control function, as part of the Brief Test of Executive Function Second Edition (BRIEF 2) Numeric Values Adult;Pediatric Supplemental 1.00 2017-03-22 09:57:02.0 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

Free-Form Entry

C13879 Imaging modality vessel imaging angiography type ImgModltyVesselImgAngioTyp Indicates imaging modality for vessel imaging angiography Indicates imaging modality for vessel imaging angiography DSA;MRA;CTA;CBCT Digital subtraction angiography;Magnetic resonance angiography;Computer tomography angiography;CBCT Alphanumeric Adult;Pediatric Supplemental 3.00 2013-06-21 00:00:00.0 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

Multiple Pre-Defined Values Selected

C14038 Imaging power M mode right middle cerebral artery result ImgPowerMModeRightMCARes Indicates power M mode for right middle cerebral artery (MCA) result Indicates power M mode for right middle cerebral artery (MCA) result Absent;High Resistance;Low Resistance;Absent;High Resistance;Low Resistance Absent;High Resistance;Low Resistance;Absent;High Resistance;Low Resistance Alphanumeric Adult;Pediatric Supplemental 3.00 2013-06-21 00:00:00.0 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

Single Pre-Defined Value Selected

C56437 Wechsler Abbreviated Scale of Intelligence - Second Edition (WASI-II) - Full Scale IQ 4 confidence interval upper bound value WASIIIFullSclIQ4ConfIntUppVal The upper bound of the subject's Full Scale IQ-4 confidence interval, as part of the Wechsler Abbreviated Scale of Intelligence - Second Edition (WASI-II). The upper bound of the subject's Full Scale IQ-4 confidence interval, as part of the Wechsler Abbreviated Scale of Intelligence - Second Edition (WASI-II). Numeric Values Adult;Pediatric Supplemental 1.00 2017-06-12 13:06:29.0 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

Free-Form Entry

C18888 Imaging acquisition reason other text ImgAcquisitionRsnOTH The free-text field related to 'Imaging acquisition reason' specifying other text. Describes why the imaging study was performed The free-text field related to 'Imaging acquisition reason' specifying other text. Describes why the imaging study was performed Alphanumeric Adult;Pediatric Supplemental 3.00 2013-06-21 00:00:00.0 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other 4000

Free-Form Entry

C12483 Imaging cortex-polymicrogyria indicator ImgCortexPolymicrogyriaInd Indicator of whether a developmental malformation of the human brain characterized by an excessive number of small convolutions (gyri) on the surface of the brain is present Indicator of whether a developmental malformation of the human brain characterized by an excessive number of small convolutions (gyri) on the surface of the brain is present Yes;No;Unknown Yes;No;Unknown Alphanumeric Adult;Pediatric Supplemental 3.00 2013-07-24 11:38:01.2 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

Single Pre-Defined Value Selected

C13935 Intima media thickness (IMT) max far-wall measurement IMTMaxFarWallMeasr Indicates max intima media thickness (IMT) far-wall measurement (mm) Indicates max intima media thickness (IMT) far-wall measurement (mm) Numeric Values Adult;Pediatric Supplemental 3.00 2013-06-21 00:00:00.0 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

Free-Form Entry

millimeter
C56388 Conners Continuous Performance Test 3rd Edition (CPT3) - Impulsivity commission count ConnersCPT3ImpCommCt The number of incorrect responses to non-targets, as part of the Conners Continuous Performance Test 3rd Edition (CPT3). The number of incorrect responses to non-targets, as part of the Conners Continuous Performance Test 3rd Edition (CPT3). Numeric Values Adult;Pediatric Supplemental 1.00 2017-06-09 15:38:27.0 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

Free-Form Entry

0
C17402 Site name SiteName The name of the site for the study The name of the site for the study Alphanumeric Adult;Pediatric Supplemental 3.00 2013-06-21 00:00:00.0 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other 255

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C02006 Medication prior or concomitant dose MedctnPriorConcomDose Dose of prior/concomitant medication taken per administration. Dose of prior/concomitant medication taken per administration. Numeric Values Adult;Pediatric Supplemental 3.00 2013-08-28 16:08:00.453 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

Free-Form Entry

3162729 DeBaun Forms
C56409 Wechsler Abbreviated Scale of Intelligence - Second Edition (WASI-II) - Similarities raw score WASIIISimRawScore The raw score that the subject received on the Similarities subtest of the Wechsler Abbreviated Scale of Intelligence - Second Edition (WASI-II) . The raw score that the subject received on the Similarities subtest of the Wechsler Abbreviated Scale of Intelligence - Second Edition (WASI-II). Numeric Values Adult;Pediatric Supplemental 1.00 2017-06-12 11:23:35.0 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

Free-Form Entry

0 45
C17527 Friedreich's Ataxia Rating Scale (FARS) - neurological exam peripheral deep tendon reflex brachioradialis jerk left score FARSPNSNeuExDTenRefBrJLftScore Score for left-side brachioradialis jerk in the peripheral nervous system section of the neurological exam, as part of the Friedreich's Ataxia Rating Scale (FARS). Score for left-side brachioradialis jerk in the peripheral nervous system section of the neurological exam, as part of the Friedreich's Ataxia Rating Scale (FARS). 0;1;2;3;4;0;1;2;3;4;0;1;2;3;4 0 - absent;1 - hyporeflexia;2 - normal;3 - hyperreflexia;4 - pathologic hyperreflexia;0 - absent;1 - hyporeflexia;2 - normal;3 - hyperreflexia;4 - pathologic hyperreflexia;0 - absent;1 - hyporeflexia;2 - normal;3 - hyperreflexia;4 - pathologic hyperreflexia Numeric Values Adult;Pediatric Supplemental 3.00 2013-07-15 16:08:48.687 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

Single Pre-Defined Value Selected

DeBaun Forms
C02308 Adverse event during study indicator AdvrsEvntDuringStudyInd Indicator of whether the participant/subject experienced any adverse events during the study Indicator of whether the participant/subject experienced any adverse events during the study Yes;No;Unknown Yes;No;Unknown Alphanumeric Adult;Pediatric Supplemental 3.00 2013-07-18 16:35:19.49 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

Single Pre-Defined Value Selected

2188132;3177812 DeBaun Forms
C21497 Wechsler Adult Intelligence Scale IV (WAIS IV) - Digit span backward subtest last trial correct digit score WAISIVLDSBScore Score for correctly recalled digits for the last trial, as part of Wechsler Adult Intelligence Scale IV (WAIS IV) Digit Span Backward subtest Score for correctly recalled digits for the last trial, as part of Wechsler Adult Intelligence Scale IV (WAIS IV) Digit Span Backward subtest Numeric Values Adult;Pediatric Supplemental 1.00 2015-07-22 11:32:44.0 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

Free-Form Entry

0 8
C13242 National Institutes of Health Stroke Scale (NIHSS) - Best language score NIHSSBestLangScore Language ability assessed using the NIH Stroke Scale (NIHSS) Language ability assessed using the NIH Stroke Scale (NIHSS) 0;1;2;3;UN;0;1;2;3;UN No aphasia, normal;Mild to moderate aphasia: some obvious loss of fluency or facility of comprehension, without significant limitation on ideas expressed or form of expression. Reduction of speech and/or comprehension, however, makes conversation about provided material difficult or impossible. For example in conversation about provided materials examiner can identify picture or naming card from patient's response.;Severe aphasia: all communication is through fragmentary expression, great need for inference, questioning, and guessing by the listener. Range of information that can be exchanged is limited: listener carries burden of communication. Examiner cannot identify materials provided from patient response.;Mute, global aphasia: no usable speech or auditory comprehension.;Unexaminable (intubated/paralyzed);No aphasia, normal;Mild to moderate aphasia: some obvious loss of fluency or facility of comprehension, without significant limitation on ideas expressed or form of expression. Reduction of speech and/or comprehension, however, makes conversation about provided material difficult or impossible. For example in conversation about provided materials examiner can identify picture or naming card from patient's response.;Severe aphasia: all communication is through fragmentary expression, great need for inference, questioning, and guessing by the listener. Range of information that can be exchanged is limited: listener carries burden of communication. Examiner cannot identify materials provided from patient response.;Mute, global aphasia: no usable speech or auditory comprehension.;Unexaminable (intubated/paralyzed) Alphanumeric Adult;Pediatric Supplemental 3.00 2013-06-21 00:00:00.0 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

Single Pre-Defined Value Selected

DeBaun Forms
C14016 Microembolic signal start time MicroembolSignalStartTime Indicates microembolic signal start time Indicates microembolic signal start time Date or Date & Time Adult;Pediatric Supplemental 3.00 2013-06-21 00:00:00.0 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

Free-Form Entry

C18610 Imaging in plane resolution axis 2 measurement ImgInPlaneRsltnAxis2Measr Axis 2 of in-plane spatial resolution used in imaging acquisition Axis 2 of in-plane spatial resolution used in imaging acquisition Numeric Values Adult;Pediatric Supplemental 1.00 2013-09-12 00:00:00.0 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

Free-Form Entry

millimeter
C10685 Imaging slice orientation type ImgSliceOrientTyp The slice orientation used in imaging acquisition The slice orientation used in imaging acquisition Axial;Coronal;Sagittal;Oblique;Transversal;Other, specify;Axial;Coronal;Sagittal;Oblique;Transversal;Other, specify Axial;Coronal;Sagittal;Oblique;Transversal;Other, specify;Axial;Coronal;Sagittal;Oblique;Transversal;Other, specify Alphanumeric Adult;Pediatric Supplemental 3.00 2013-07-24 11:38:01.2 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

Single Pre-Defined Value Selected

C13914 Imaging plaque residual lumen result ImgPlaqResidualLumenReslt Indicates plaque residual lumen Indicates plaque residual lumen Alphanumeric Adult;Pediatric Supplemental 3.00 2013-06-21 00:00:00.0 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other 255

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C54692 PROMIS - Global Health carry out social role scale PROMISGlbHlthCrryOutSocRlScl Scale related to an individual's rating of his/her ability to carry out usual social activities and roles, as part of the PROMIS Global Health Scale related to an individual's rating of his/her ability to carry out usual social activities and roles, as part of the PROMIS Global Health 1;2;3;4;5;1;2;3;4;5 Excellent;Very good;Good;Fair;Poor;Excellent;Very good;Good;Fair;Poor Alphanumeric Adult;Pediatric Supplemental 1.00 2017-04-07 15:34:25.0 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

Single Pre-Defined Value Selected

C14678 Pediatric Migraine Disability Assessment (MIDAS) - headache school absence day count PedMIDASHeadSchAbseDayCt Count missed full school days in the last 3 months due to headaches, as part of migraine disability assessment (MIDAS) questionnaire-pediatric form. Count missed full school days in the last 3 months due to headaches, as part of migraine disability assessment (MIDAS) questionnaire-pediatric form. Numeric Values Adult;Pediatric Supplemental 3.00 2013-07-16 14:01:43.01 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

Free-Form Entry

0 92
C00720 Family history medical condition type FamHistMedclCondTyp Type of medical condition or health related event for which the family history is taken Type of medical condition or health related event for which the family history is taken Alphanumeric Adult;Pediatric Supplemental 3.00 2013-07-24 11:38:01.2 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

Multiple Pre-Defined Values Selected

3165585 DeBaun Forms
C19151 Discontinuation date DiscontinuationDate The date of discontinuation The date of discontinuation Date or Date & Time Adult;Pediatric Supplemental 1.00 2014-05-29 11:10:46.0 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

Free-Form Entry

DeBaun Forms
C12494 Imaging pons abnormal indicator ImgPonsAbnrmlInd Indicator of whether the pons appears normal or abnormal in the image studies Indicator of whether the pons appears normal or abnormal in the image studies Abnormal;Normal;Abnormal;Normal Abnormal;Normal;Abnormal;Normal Alphanumeric Adult;Pediatric Supplemental 3.00 2013-07-24 11:38:01.2 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

Single Pre-Defined Value Selected

C13946 Imaging spectrum angle correction indicator ImgSpectrumAngleCorrectionInd Indicates spectrum angle correction Indicates spectrum angle correction Yes;No;Unknown Yes;No;Unknown Alphanumeric Adult;Pediatric Supplemental 3.00 2013-06-21 00:00:00.0 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

Single Pre-Defined Value Selected

491 results.
CSV