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
C14037 Imaging power M mode left middle cerebral artery result ImgPowerMModeLeftMCARes Indicates power M mode for left middle cerebral artery (MCA) result Indicates power M mode for left 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

C56436 Wechsler Abbreviated Scale of Intelligence - Second Edition (WASI-II) - Full Scale IQ 4 confidence interval lower bound value WASIIIFullSclIQ4ConfIntLowVal The lower 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 lower 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

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

Free-Form Entry

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
C13934 Intima media thickness (IMT) max near-wall measurement IMTMaxNearWallMeasr Indicates max intima media thickness (IMT) near-wall measurement (mm) Indicates max intima media thickness (IMT) near-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
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

C12504 Imaging gray matter hyperintensity T2 fluid attenuated inversion recovery site ImgGryMtrHyperT2FLAIRSiteTyp The type of anatomical site of the grey matter hyperintensity on T2/FLAIR (fluid attenuated inversion recovery) images The type of anatomical site of the grey matter hyperintensity on T2/FLAIR images Putamen;Caudate;Other, specify;Cerebellar nuclei;Colliculi;Floor of the fourth ventricle;Pallidum;Periaqueductal grey;Red nucleus;Substantia nigra;Mammillary body;Subthalmic nucleus;Thalamus Putamen;Caudate;Other, specify;Cerebellar nuclei;Colliculi;Floor of the fourth ventricle;Pallidum;Periaqueductal grey;Red nucleus;Substantia nigra;Mammillary body;Subthalmic nucleus;Thalamus 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

C17397 Visit number VisitNum The numeric value associated with a particular assessment/examination of a participant/subject on a study The numeric value associated with a particular assessment/examination of a participant/subject on a study Numeric Values Adult;Pediatric Supplemental 1.00 2012-12-20 00:00:00.0 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

Free-Form Entry

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
C05408 Hospital admission date and time HospitlAdmissDateTime Date (and time, if applicable and known) the participant/subject was admitted to the hospital Date (and time, if applicable and known) the participant/subject was admitted to the hospital Date or Date & Time Adult;Pediatric Supplemental 3.00 2013-07-25 08:54:08.2 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

Free-Form Entry

DeBaun Forms
C14004 Imaging brain death vessel anatomic site ImgBrainDeathVesseIAntmicSite Indicates brain death vessel(s) Indicates brain death vessel(s) ICA;Basilar;MCA;Other, specify;ACA;VA;PCA;Ophthalmic artery Internal carotid artery;Basilar;Middle cerebral artery;Other, specify;Anterior carotid artery;Vertebral artery;Posterior carotid artery;Ophthalmic artery 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

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

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
C14015 Microembolic signal count MicroembolSignalCt Numeric value counting the number of microembolic signals. Indicates microembolic signal number 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

0 999
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

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

C13913 Imaging plaque motion result ImgPlaqMotionReslt Indicates plaque motion Indicates plaque motion 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

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

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

C14559 EEG recording start date and time EEGRecordingStrtDateTime Date (and time, if applicable and known) the electroencephalogram (EEG) recording began Date the electroencephalogram (EEG) recording began Date or Date & Time Adult;Pediatric Supplemental 3.00 2013-08-28 16:08:00.453 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

Free-Form Entry

DeBaun Forms
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

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
C13945 Imaging spectrum depth measurement ImgSpectrumDepthMeasr Indicates spectrum depth measurement (mm) Indicates spectrum depth 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

0 999 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
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
C17526 Friedreich's Ataxia Rating Scale (FARS) - neurological exam peripheral deep tendon reflex biceps jerk right score FARSPNSNeuExDTenRefBicJRtScore Score for right-side biceps jerk in the peripheral nervous system section of the neurological exam, as part of the Friedreich's Ataxia Rating Scale (FARS). Score for right-side biceps 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
C13892 Arterial occlusive lesion (AOL) recanalization score AOLRecanalScore The score as related to recanalization of the primary arterial occlusive lesion (AOL). The score as related to recanalization of the primary arterial occlusive lesion (AOL). 0;1;2;3;0;1;2;3;0;1;2;3 No recanalization of the primary occlusive lesion;Incomplete or partial recanalization of the primary occlusive lesion with no distal flow;Incomplete or partial recanalization of the primary occlusive lesion with any distal flow;Complete recanalization of the primary occlusion with any distal flow;No recanalization of the primary occlusive lesion;Incomplete or partial recanalization of the primary occlusive lesion with no distal flow;Incomplete or partial recanalization of the primary occlusive lesion with any distal flow;Complete recanalization of the primary occlusion with any distal flow;No recanalization of the primary occlusive lesion;Incomplete or partial recanalization of the primary occlusive lesion with no distal flow;Incomplete or partial recanalization of the primary occlusive lesion with any distal flow;Complete recanalization of the primary occlusion with any distal flow Numeric values 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

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
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

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

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
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
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

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

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

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

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
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
C13956 Microembolic signal duration MicroembolSignalDur Indicates microembolic signal duration time (msec) Indicates microembolic signal duration time (msec) 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

0 999 millisecond
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
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
491 results.
CSV