CDE Detailed Report
Disease: general-data-protection-regulation-gdpr
Sub-Domain: Additional Proposed Instruments
CRF:

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
C13912 Imaging plaque composition result ImgPlaqCompositionReslt Indicates plaque composition Indicates plaque composition 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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C13461 Pediatric Stroke Outcomes Measure-Neuro Exam (PSOM-SNEVOct2003) - language deficit-comprehension description text PSOMSNELangDefCompDescTxt Description of the language comprehension deficits observed in the participant/subject based on Pediatric Stroke Outcomes Measure-Neuro Exam (PSOM-SNEVOct2003). Description of the language comprehension 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

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DeBaun Forms
C14463 Reflex plantar left response result RflxPlntrLftRespnsReslt The results from reflex plantar response on the left side The results from reflex plantar response on the left side Flexor;Extensor;Equivocal;Cannot Assess;Other, specify Flexor;Extensor;Equivocal;Cannot Assess;Other, specify Alphanumeric Adult;Pediatric Supplemental 1.00 2012-10-05 00:00:00.0 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

Multiple Pre-Defined Values Selected

DeBaun Forms
C18693 Imaging contrast agent method other text ImgContrastAgentMethodOTH The free-text field related to 'Imaging contrast agent method type' specifying other text. Indicates imaging contrast agent method of administration The free-text field related to 'Imaging contrast agent method type' specifying other text. Indicates imaging contrast agent method of administration 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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C12474 Imaging field of view measurement description text ImgFOVMeasrDescTxt The general description of field of view (FOV) or anatomical positioning The general description of field of view (FOV) or anatomical positioning Alphanumeric Adult;Pediatric Supplemental 3.00 2013-07-24 11:38:01.2 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other 4000

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C55773 Imaging MRI scanner used count ImagMRIScanUsedCt The number of different MRI scanners that were used on the subject. The number of different MRI scanners that were used on the subject. Numeric Values Adult;Pediatric Supplemental 1.00 2017-05-31 12:11:13.0 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

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C13944 Imaging color flow indicator ImgColorFlowInd Indicates color flow Indicates color flow 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

C01541 Weight measurement WgtMeasr Measurement of participant's/subject's weight Measurement of participant's/subject's weight Numeric Values Adult;Pediatric Supplemental 3.00 2013-07-25 08:54:08.2 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

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0 500 kilogram 2179689 DeBaun Forms
C17525 Friedreich's Ataxia Rating Scale (FARS) - neurological exam peripheral deep tendon reflex biceps jerk left score FARSPNSNeuExDTenRefBicJLftScr Score for left-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 left-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
C02014 Medication prior or concomitant name MedctnPriorConcomName Name of the prior/concomitant agent or drug administered. Name of the prior/concomitant agent or drug administered. Alphanumeric Adult;Pediatric Supplemental 3.00 2013-08-28 16:08:00.453 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other 4000

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3162728 DeBaun Forms
C20419 National Institutes of Health Stroke Scale (NIHSS) - Limb ataxia amputation text NIHSSLimbAtaxiaAmputTxt The text field for explaining the amputation or joint fusion for question related to Limb ataxia assessed using the NIH Stroke Scale (NIHSS). The text field for explaining the amputation or joint fusion for question related to Limb ataxia assessed using the NIH Stroke Scale (NIHSS). Alphanumeric Adult;Pediatric Supplemental 4.00 2015-04-27 00:00:00.0 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other 4000

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DeBaun Forms
C13891 Thrombolysis in Cerebral Infarction (TICI) perfusion scale grade TICIPerfScaleGrade Indicates Thrombolysis in Cerebral Infarction (TICI) perfusion scale grade indicator Indicates Thrombolysis in Cerebral Infarction (TICI) perfusion scale grade indicator Grade 0;Grade 1;Grade 2;Grade 2b;Grade 3 No perfusion. No antegrade flow beyond the point of occlusion;Penetration with Minimal Perfusion. The contrast material passes beyond the area of obstruction but fails to opacify the entire cerebral bed distal to the obstruction for the duration of the angiographic run;Partial Perfusion. The contrast material passes beyond the obstruction and opacifies the arterial bed distal to the obstruction. However, the rate of entry of contrast into the vessel distal to the obstruction and/or its rate of clearance from the distal bed are perceptibly slower than its entry into and/or clearance from comparable areas not perfused by the previously occluded vessel, eg, the opposite cerebral artery or the arterial bed proximal to the obstruction. Grade 2a=Only partial filling (<2/3) of the entire vascular territory is visualized;Complete filling of all of the expected vascular territory is visualized, but the filling is slower than normal;Complete Perfusion. antegrade flow into the bed distal to the obstruction occurs as promptly as into the obstruction and clearance of contrast material from the involved bed is as rapid as from an uninvolved other bed of the same vessel or the opposite cerebral artery. 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

C13233 National Institutes of Health Stroke Scale (NIHSS) - Level of consciousness secondary question score NIHSSLvlConscSecdryQScore Level of consciousness (LOC) questions assessed using the NIH Stroke Scale (NIHSS) Level of consciousness (LOC) questions assessed using the NIH Stroke Scale (NIHSS) 0;1;2;0;1;2;0;1;2 Answers both questions correctly;Answers one question correctly;Answers neither question correctly;Answers both questions correctly;Answers one question correctly;Answers neither question correctly;Answers both questions correctly;Answers one question correctly;Answers neither question correctly 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

DeBaun Forms
C56425 Wechsler Abbreviated Scale of Intelligence - Second Edition (WASI-II) - Verbal Comprehension percentile rank value WASIIIVerbCompPrcntRankVal The percentile rank the subject placed into with respect to the Verbal Comprehension subtests, as part of the Wechsler Abbreviated Scale of Intelligence - Second Edition (WASI-II). The percentile rank the subject placed into with respect to the Verbal Comprehension subtests, as part of the Wechsler Abbreviated Scale of Intelligence - Second Edition (WASI-II). Numeric Values Adult;Pediatric Supplemental 1.00 2017-06-12 12:05:57.0 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

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0 100 percent
C14026 Intracranial pressure imaging result ICPReslt Indicates intracranial pressure (ICP) imaging result Indicates vasospasm intracranial pressure (ICP) imaging result Numeric Values Adult;Pediatric Supplemental 3.00 2013-06-21 00:00:00.0 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

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0 999 millimeter of mercury
C08245 Imaging slice count ImgSliceCt Count representing the total number of single image planes captured during imaging acquisition Count representing the total number of single image planes captured during imaging acquisition Numeric Values Adult;Pediatric Supplemental 3.00 2013-07-25 08:54:08.2 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

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C54603 Informant participant familiar grade InfrmntPrtcpntFmlrGrade Grade denoting the degree to which the informant knows the subject/participant Grade denoting the degree to which the informant knows the subject/participant Very well;Moderately well;Not well Very well;Moderately well;Not well Alphanumeric Adult;Pediatric Supplemental 1.00 2017-03-22 09:39:15.0 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

Single Pre-Defined Value Selected

C13923 Imaging power doppler result ImgPowerDopplerReslt Indicates power doppler result Indicates power Doppler result Flow;No flow Flow;No flow 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

C13881 Digital Subtraction Angiography (DSA) injection site anatomic site DSAInjectionSiteAntmicSite The site of injection for digital subtraction angiography (DSA), a type of fluoroscopy technique used in interventional radiology to clearly visualize blood vessels in a bony or dense soft tissue environment. The site of injection for digital subtraction angiography (DSA), a type of fluoroscopy technique used in interventional radiology to clearly visualize blood vessels in a bony or dense soft tissue environment. Arch;Common carotid;Internal carotid;Vertebral;subclavian;Arch;Common carotid;Internal carotid;Vertebral;subclavian Arch;Common carotid;Internal carotid;Vertebral;subclavian;Arch;Common carotid;Internal carotid;Vertebral;subclavian 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

C00007 Birth date BirthDate Date (and time, if applicable and known) the participant/subject was born Date (and time, if applicable and known) the participant/subject was born 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

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793 DeBaun Forms
C14964 Sedation used indicator SedationUsedInd Whether the participant/subject was administered any sedation Whether the participant/subject was administered any sedation Yes;No;Unknown Yes;No;Unknown Alphanumeric Adult;Pediatric Supplemental 3.00 2013-07-14 19:48:50.273 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

Single Pre-Defined Value Selected

C18855 Imaging other cortical abnormality other text ImgOthrCorticalAbnrmlyOTH The free-text field related to 'Imaging other cortical abnormality type' specifying other text. The type of other cortical abnormality The free-text field related to 'Imaging other cortical abnormality type' specifying other text. The type of other cortical abnormality Alphanumeric Adult;Pediatric Supplemental 3.00 2013-07-24 11:38:01.2 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other 4000

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C12485 Imaging other cortical abnormality indicator ImgOthrCorticalAbnrmlyInd Indicator of whether other cortical abnormalities of the brain are present Indicator of whether other cortical abnormalities of the brain are 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

C56380 Conners Continuous Performance Test 3rd Edition (CPT3) - Inattentiveness omission count ConnersCPT3InaOmmCt The number of missed targets, as part of the Conners Continuous Performance Test 3rd Edition (CPT3) The number of missed targets, as part of the Conners Continuous Performance Test 3rd Edition (CPT3) Numeric Values Adult;Pediatric Supplemental 1.00 2017-06-09 15:29:58.0 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

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0
C13955 Imaging transcranial color-coded sonography symptomatic indicator ImgTCCSSymptomaticInd Indicates symptomatic presentation by Transcranial Color-Coded Sonography (TCCS) Indicates symptomatic presentation by Transcranial Color-Coded Sonography (TCCS) 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

C56441 Wechsler Abbreviated Scale of Intelligence - Second Edition (WASI-II) - Full Scale IQ 2 confidence interval upper bound value WASIIIFullSclIQ2ConfIntUppVal The upper bound of the subject's Full Scale IQ-2 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-2 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

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C12496 Imaging cerebellum abnormal indicator ImgCrblmAbnrmlInd Indicator as to whether the cerebellum appears normal or abnormal in the image studies Indicator as to whether the cerebellum 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

C56395 Conners Continuous Performance Test 3rd Edition (CPT3) - Vigilance hit reaction time inter-stimulus interval change value ConnersCPT3VigHRTISIChngVal The change in response speed at various inter-stimulus intervals (ISIs), as part of the Conners Continuous Performance Test 3rd Edition (CPT3). The change in response speed at various inter-stimulus intervals (ISIs), as part of the Conners Continuous Performance Test 3rd Edition (CPT3). Numeric Values Adult;Pediatric Supplemental 1.00 2017-06-09 15:46:09.0 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

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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

C02310 Adverse event CTCAE low level term name AdvrsEvntCTCAELowLvlTermName Text that represents the Common Terminology Criteria for Adverse Events (CTCAE) low level term name for an adverse event. Text that represents the Common Terminology Criteria for Adverse Events (CTCAE) low level term name for an adverse event. Alphanumeric Adult;Pediatric Supplemental 3.00 2013-08-28 16:08:00.453 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other 255

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3125302 DeBaun Forms
C21491 Wechsler Adult Intelligence Scale IV (WAIS IV) - Digit span backward subset response text WAISIVDSBRespnsTxt Participant response, as part of Wechsler Adult Intelligence Scale IV (WAIS IV) Digit Span Backward subtest Participant response, as part of Wechsler Adult Intelligence Scale IV (WAIS IV) Digit Span Backward subtest Alphanumeric Adult;Pediatric Supplemental 1.00 2015-07-22 11:32:44.0 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other 50

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C13902 Imaging acute stroke study type ImgAcutStokStudTyp Indicates imaging acute stroke study type Indicates imaging acute stroke study type Initial;Follow-up 1;Follow-up 2 Initial;Follow-up 1;Follow-up 2 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

C13244 National Institutes of Health Stroke Scale (NIHSS) - Extinction and inattention score NIHSSExtinctInattentScore Extinction and inattention assessed using the NIH Stroke Scale (NIHSS) Extinction and inattention assessed using the NIH Stroke Scale (NIHSS) 0;1;2;UN;0;1;2;UN No abnormality.;Visual, tactile, auditory, spatial, or personal inattention or extinction to bilateral simultaneous stimulation in one of the sensory modalities.;Profound hemi-inattention or extinction to more than one modality. Does not recognize own hand or orients to only one side of space.;Unexaminable (intubated/paralyzed;No abnormality.;Visual, tactile, auditory, spatial, or personal inattention or extinction to bilateral simultaneous stimulation in one of the sensory modalities.;Profound hemi-inattention or extinction to more than one modality. Does not recognize own hand or orients to only one side of space.;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
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

C17925 Imaging contrast agent dose ImgContrastAgentDose Dosage of the contrast agent used Dosage of the contrast agent used Alphanumeric Adult;Pediatric Supplemental 3.00 2013-07-24 11:38:01.2 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other 4000

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C10927 Imaging inversion time ImgInversionTime The time period between the 180° inversion pulse and the 90° excitation pulse in an Inversion Recovery pulse sequence. The time period between the 180° inversion pulse and the 90° excitation pulse in an Inversion Recovery pulse sequence. Numeric Values Adult;Pediatric Supplemental 3.00 2013-07-25 08:54:08.2 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

Free-Form Entry

millisecond
C54614 Brief Test of Executive Function Second Edition (BRIEF 2) - Task monitor total raw scale score BRIEF2TskMntrTtlRwSclScore Total score of the raw scale for the task-monitor function, as part of the Brief Test of Executive Function Second Edition (BRIEF 2) Total score of the raw scale for the task-monitor 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

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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
C00722 Family history medical condition relative type FamHistMedclCondReltvTy Relationship of the family member or ancestor with the medical condition or health related event to the participant/subject Relationship of the family member or ancestor with the medical condition or health related event to the participant/subject Mother;Father;Full sibling;Half sibling;Child;Maternal grandmother;Paternal grandmother;Maternal grandfather;Paternal grandfather;Maternal aunt;Paternal aunt;Maternal uncle;Paternal uncle;Maternal niece/nephew;Paternal niece/nephew;Grandchild;Other, specify;Maternal cousin;Paternal cousin;Great-grandchild Mother;Father;Full sibling;Half sibling;Child;Maternal grandmother;Paternal grandmother;Maternal grandfather;Paternal grandfather;Maternal aunt;Paternal aunt;Maternal uncle;Paternal uncle;Maternal niece/nephew;Paternal niece/nephew;Grandchild;Other, specify;Maternal cousin;Paternal cousin;Great-grandchild 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

3165810 DeBaun Forms
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

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DeBaun Forms
C18901 Sickle cell disease vessel anatomic other text SickleCellDisVesselAntmicOTH The free-text field related to 'Sickle cell disease vessel anatomic site' specifying other text. Indicates sickle cell vessel The free-text field related to 'Sickle cell disease vessel anatomic site' specifying other text. Indicates sickle cell vessel Alphanumeric Adult;Pediatric Supplemental 3.00 2013-06-21 00:00:00.0 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other 4000

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491 results.
CSV