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
C13954 Consensus on Grading Intracranial Flow Obstruction (COGIF) - follow-up date and time COGIFFollowupDateTime The date and time for consensus on grading intracranial flow obstruction (COGIF) follow-up. The date and time for consensus on grading intracranial flow obstruction (COGIF) follow-up. 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

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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

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DeBaun Forms
C08254 Imaging visual analysis location performed type ImgVisAnlysisLocPerfTyp Location where visual analysis of the imaging data are performed Location where visual analysis of the imaging data are performed Central;Central read;Local - Site;Local read;Local report;Other, specify Central;Central read;Local - Site;Local read;Local report;Other, specify Alphanumeric Adult;Pediatric Supplemental 3.00 2013-07-25 08:54:08.2 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

Single Pre-Defined Value Selected

C13889 Thrombolysis In Myocardial Infarction (TIMI) scale - global score TIMIScaleGlobalScore Indicates TIMI perfusion scale global score Indicates TIMI perfusion scale global score 0;1;2;3;0;1;2;3;0;1;2;3 No perfusion;Perfusion past the initial occlusion, but no distal branch filling;Perfusion with incomplete or slow distal branch filling;Full perfusion with filling of all distal branches;No perfusion;Perfusion past the initial occlusion, but no distal branch filling;Perfusion with incomplete or slow distal branch filling;Full perfusion with filling of all distal branches;No perfusion;Perfusion past the initial occlusion, but no distal branch filling;Perfusion with incomplete or slow distal branch filling;Full perfusion with filling of all distal branches 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

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

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0 45
C00008 Age value AgeVal Value for participant/subject's age, calculated as elapsed time since the birth of the participant/subject. Value for participant/subject's age, calculated as elapsed time since the birth of the participant/subject. Numeric Values Adult;Pediatric Supplemental 3.00 2013-08-28 16:08:00.453 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

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0 1800 month DeBaun Forms
C14025 Vasospasm Lindegaard ratio value VasoLinegaardRatioVal Indicates vasospasm Lindegaard ratio result Indicates vasospasm Lindegaard ratio 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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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

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0 8
C12486 Imaging other cortical abnormality type ImgOthrCorticalAbnrmlyTyp The type of other cortical abnormality The type of other cortical abnormality Schizencephaly;Porencephaly;Other, specify Schizencephaly;Porencephaly;Other, specify 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

C13922 Imaging common carotid artery (CCA) externalization indicator ImgCCAExternalizInd Indicates common carotid artery (CCA) externalization Indicates common carotid artery (CCA) externalization 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

C13933 Intima media thickness (IMT) mean far-wall measurement IMTMeanFarWallMeasr Indicates mean intima media thickness (IMT) far-wall measurement (mm) Indicates mean 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

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millimeter
C18720 Imaging visual analysis location performed other text ImgVisAnlysisLocPerfOTH The free-text field related to 'Imaging visual analysis location performed type' specifying other text. Location where visual analysis of the imaging data are performed The free-text field related to 'Imaging visual analysis location performed type' specifying other text. Location where visual analysis of the imaging data are performed 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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C02311 Adverse event MedDRA lower level term code AdvsEvntMedDRALowerLvlTermCode Code that corresponds to the Medical Dictionary for Regulatory Activities (MedDRA) Lower Level Term (LLT) for an adverse event Code that corresponds to the Medical Dictionary for Regulatory Activities (MedDRA) Lower Level Term (LLT) for an adverse event Alphanumeric Adult;Pediatric Supplemental 3.00 2013-07-18 16:35:19.49 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other 255

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3133353 DeBaun Forms
C16679 Cambridge Brain Repair Center Sleep Questionnaire (BRC-Sleep) - intentionally nap day indicator BRCIntentNapDayInd The yes/no indicator for napping intentionally during the day from Cambridge Brain Repair Center Sleep Questionnaire (BRC-Sleep). The yes/no indicator for napping intentionally during the day from Cambridge Brain Repair Center Sleep Questionnaire (BRC-Sleep). No;Yes No;Yes 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

DeBaun Forms
C55780 Imaging vessel studied text ImagVessStudTxt Text describing any and all of the subject's vessels that were studied. Text describing any and all of the subject's vessels that were studied. Alphanumeric Adult;Pediatric Supplemental 1.00 2017-05-31 12:30:51.0 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other 255

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C13245 National Institutes of Health Stroke Scale (NIHSS) - Severity total score NIHSSSevTotalScore The level of stroke severity as measured by the NIH Stroke Scale (NIHSS) scoring system (i.e., total of the subscale item scores). The level of stroke severity as measured by the NIH Stroke Scale (NIHSS) scoring system (i.e., total of the subscale item scores). 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 42
C14003 Imaging brain death present indicator ImgBrainDeathPresInd Indicates presence of brain death Indicates presence of brain death 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

C19904 Symptom disease lab data known disease other text SymptSignDisLabDataOTH Text of other symptoms, signs, known diseases, and lab data Text of other symptoms, signs, known diseases, and lab data Alphanumeric Adult;Pediatric Supplemental 1.00 2015-02-09 00:00:00.0 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other 4000

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DeBaun Forms
C10931 Imaging quality of images technically satisfactory indicator ImgQualImgTechnSatisInd Indicator of whether the quality of the images were technically satisfactory. Indicator of whether the quality of the images were technically satisfactory. Yes;No;Unknown;Not applicable Yes;No;Unknown;Not applicable Alphanumeric Adult;Pediatric Supplemental 3.00 2013-07-25 08:54:08.2 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

Single Pre-Defined Value Selected

C13901 Imaging patient type ImgPatientTyp Indicates imaging patient type Indicates imaging patient type Asymptomatic;Acute Stroke;Chronic Stroke;Brain Edema;Vasopasm;Asymptomatic;Acute Stroke;Chronic Stroke;Brain Edema;Vasopasm Asymptomatic;Acute Stroke;Chronic Stroke;Brain Edema;Vasopasm;Asymptomatic;Acute Stroke;Chronic Stroke;Brain Edema;Vasopasm 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

C56421 Wechsler Abbreviated Scale of Intelligence - Second Edition (WASI-II) - Examinee visual hearing aid prescription lens used indicator WASIIIExVisHeaAidPreLensUseInd The indicator relating to the examine used his/her prescription lenses during testing, as part of the Wechsler Abbreviated Scale of Intelligence - Second Edition (WASI-II). The indicator relating to the examine used his/her prescription lenses during testing, as part of the Wechsler Abbreviated Scale of Intelligence - Second Edition (WASI-II). Used;Not used Used;Not used Alphanumeric Adult;Pediatric Supplemental 1.00 2017-06-12 11:54:51.0 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

Single Pre-Defined Value Selected

C01013 Physical exam description text PhysExamDescripTxt Free text field to describe the abnormality in a specific body system or an explanation of why the body system was not examined Free text field to describe the abnormality in a specific body system or an explanation of why the body system was not examined Alphanumeric Adult;Pediatric Supplemental 3.00 2013-07-25 08:54:08.2 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other 255

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2201880 DeBaun Forms
C14036 Breath-holding index result BreathHoldingIndexReslt Indicates breath-holding index (BHI) result Indicates breath-holding index (BHI) result 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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C50680 Examiner name ExaminerName The name of the person performing the exam. The name of the person performing the exam. Alphanumeric Adult;Pediatric Supplemental 1.00 2016-12-12 00:00:00.0 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other 255

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C12497 Imaging cerebellum abnormality type ImgCrblmAbnrmlyTyp The type of abnormality in the cerebellum on the image The type of abnormality in the cerebellum on the image Other, specify;Cleft;Vermal hypoplasia;Hemispheric hypoplasia;Vermal dysplasia;Hemispheric dysplasia;Cysts Other, specify;Cleft;Vermal hypoplasia;Hemispheric hypoplasia;Vermal dysplasia;Hemispheric dysplasia;Cysts 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

C54610 Brief Test of Executive Function Second Edition (BRIEF 2) - Task completion total raw scale score BRIEF2TskCmpltnTtlRwSclScore Total score of the raw scale for the task completion function, as part of the Brief Test of Executive Function Second Edition (BRIEF 2) Total score of the raw scale for the task completion 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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C13147 Stroke Specific Quality of Life Scale (SS-QOL) - trouble phone language scale SSQOLTroubPhonScale The scale for trouble speaking on phone based on Stroke Specific Quality of Life Scale (SS-QOL). The scale for trouble speaking on phone based on Stroke Specific Quality of Life Scale (SS-QOL). 1;2;3;4;5;1;2;3;4;5 Total help - Couldn't do it at all - Strongly agree;A lot of help - A lot of trouble - Moderately agree;Some help - Some trouble - Neither agree nor disagree;A little help - A little trouble - Moderately disagree;No help needed - No trouble at all - Strongly disagree;Total help - Couldn't do it at all - Strongly agree;A lot of help - A lot of trouble - Moderately agree;Some help - Some trouble - Neither agree nor disagree;A little help - A little trouble - Moderately disagree;No help needed - No trouble at all - Strongly disagree 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
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

C18891 Imaging vessel angiography collateral status anatomic other text ImgVessAngioCollatStatAntOTH The free-text field related to 'Imaging vessel angiography collateral status anatomic site' specifying other text. Indicates vessel angiography collateral status location The free-text field related to 'Imaging vessel angiography collateral status anatomic site' specifying other text. Indicates vessel angiography collateral status location 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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C08147 Data source DataSource Source of the data provided on the case report form Source of the data provided on the case report form Participant/subject;Mother;Father;Sister;Brother;Son;Daughter;Family, specify relation;Friend;Physician;Chart/Medical record;Other, specify;Unknown;Spouse Participant/subject;Mother;Father;Sister;Brother;Son;Daughter;Family, specify relation;Friend;Physician;Chart/Medical record;Other, specify;Unknown;Spouse Alphanumeric Adult;Pediatric Supplemental 3.00 2013-07-20 10:46:24.96 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

Multiple Pre-Defined Values Selected

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
C56390 Conners Continuous Performance Test 3rd Edition (CPT3) - Impulsivity perseveration count ConnersCPT3ImpPersCt The number of random or anticipatory responses, as part of the Conners Continuous Performance Test 3rd Edition (CPT3). The number of random or anticipatory responses, as part of the Conners Continuous Performance Test 3rd Edition (CPT3). Numeric Values Adult;Pediatric Supplemental 1.00 2017-06-09 15:39:31.0 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

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0
C13463 Pediatric Stroke Outcomes Measure-Neuro Exam (PSOM-SNEVOct2003) - cognitive or behavioral deficit description text PSOMSNECogBehavDeficitDescTxt Description of the cognitive or behavioral deficits observed in the participant/subject based on Pediatric Stroke Outcomes Measure-Neuro Exam (PSOM-SNEVOct2003). Description of the cognitive or behavioral 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
C14014 Intracranial stenosis other criteria result IntracranStenoOthCriteriaReslt Other criteria for intracranial stenosis Other criteria for intracranial stenosis 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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C21487 Wechsler Adult Intelligence Scale IV (WAIS IV) - Digit span forward subtest trial score WAISIVDSFTrlScore Score for the digit span forward subtest, as part of Wechsler Adult Intelligence Scale IV (WAIS IV) Digit Span Forward subtest Score for the digit span forward subtest, as part of Wechsler Adult Intelligence Scale IV (WAIS IV) Digit Span Forward subtest 0;1;0;1;0;1 0;1;0;1;0;1 Numeric Values Adult;Pediatric Supplemental 2.00 2018-07-30 00:00:00.0 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

Single Pre-Defined Value Selected

C12476 Imaging other incidental finding indicator ImgOthrIncidentalFindInd Indicator of whether other incidental findings are found within the image studies Indicator of whether other incidental findings are found within the image studies 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

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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C56433 Wechsler Abbreviated Scale of Intelligence - Second Edition (WASI-II) - Perceptual Reasoning confidence interval upper bound value WASIIIPercRsngConfIntrvlUppVal The upper bound of the subject's Perceptual Reasoning confidence interval, as part of the Wechsler Abbreviated Scale of Intelligence - Second Edition (WASI-II). The upper 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

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C01559 Arterial partial pressure carbon dioxide value ArterialPPCO2Val Measurement of how much carbon dioxide is dissolved in the arterial blood and how well carbon dioxide is able to move out of the body (PaCO2) Measurement of how much carbon dioxide is dissolved in the arterial blood and how well carbon dioxide is able to move out of the body (PaCO2) Numeric Values Adult;Pediatric Supplemental 3.00 2013-07-20 10:21:25.65 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

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0 100 millimeter of mercury
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
C56444 Wechsler Abbreviated Scale of Intelligence - Second Edition (WASI-II) - Full Scale IQ 4 expected score WASIIIFullScaleIQ4ExpScore The Full Scale IQ score for all four subtests that the subject was expected to receive, as part of the Wechsler Abbreviated Scale of Intelligence - Second Edition (WASI-II). The Full Scale IQ score for all four subtests that the subject was expected to receive, as part of the Wechsler Abbreviated Scale of Intelligence - Second Edition (WASI-II). Numeric Values Adult;Pediatric Supplemental 1.00 2017-06-12 13:20:27.0 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

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491 results.
CSV