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
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
C21501 Wechsler Adult Intelligence Scale IV (WAIS IV) - Digit span sequencing subtest item number WAISIVDSSItemNum Item number, as part of Wechsler Adult Intelligence Scale IV (WAIS IV) Digit Span Sequencing subtest Item number, as part of Wechsler Adult Intelligence Scale IV (WAIS IV) Digit Span Sequencing subtest 1;2;3;4;5;6;7;8 Item 1;Item 2;Item 3;Item 4;Item 5;Item 6;Item 7;Item 8 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

C02008 Medication prior or concomitant end date and time MedctnPriorConcomEndDateTime The date (and time, if applicable and known) the administration of the prior/concomitant medication ended. The date (and time, if applicable and known) the administration of the prior/concomitant medication ended. 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

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3162753 DeBaun Forms
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

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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C13232 National Institutes of Health Stroke Scale (NIHSS) - Level of consciousness primary question score NIHSSLvlConscPrimryQScore Level of consciousness assessed using the NIH Stroke Scale (NIHSS) Level of consciousness assessed using the NIH Stroke Scale (NIHSS) 0;1;2;3;UN;0;1;2;3;UN Alert: keenly responsive;Not alert, but arousable by minor stimulation to obey, answer, or respond;Not alert, requires repeated stimulation to attend, or is obtunded and requires strong or painful stimulation to make movements (not stereotyped);Responds only with reflex motor or autonomic effects or totally unresponsive, flaccid, flexic;Unexaminable (intubated/paralyzed);Alert: keenly responsive;Not alert, but arousable by minor stimulation to obey, answer, or respond;Not alert, requires repeated stimulation to attend, or is obtunded and requires strong or painful stimulation to make movements (not stereotyped);Responds only with reflex motor or autonomic effects or totally unresponsive, flaccid, flexic;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
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
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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C08244 Imaging slice thickness value ImgSliceThicknessVal Value of the thickness of the slice measured in millimeters (mm) Value of the thickness of the optical slice measured in millimeters (mm) 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 99 millimeter
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

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C10837 Imaging gap between slices measurement ImgGapBetwnSlicesMeasr Measurement of the gap between slices used in imaging acquisition Measurement of the gap between slices used in 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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millimeter
C14028 Vasospasm present indicator VasoPresInd Indicates presence of vasospasm Indicates presence of vasospasm 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

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
C00721 Family history medical condition indicator FamHistMedclCondInd Indicator of whether a family member or first and second degree blood relatives of the participant/subject has had a history of the particular medical condition or health related event Indicator of whether a family member or first and second degree blood relatives of the participant/subject has had a history of the particular medical condition or health related event 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

3165788 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

Free-Form Entry

0 100 percent
C13925 Imaging vertebral interosseous result ImgVertebralInterosseousReslt Indicates vertebral interosseous Indicates vertebral interosseous Normal;Occlusion;Stenosis Normal;Occlusion;Stenosis 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

C12495 Imaging pons abnormality type ImgPonsAbnrmlyTyp The type of abnormality in the pons on the image The type of abnormality in the pons on the image Hypoplasia;Other, specify;Cleft Hypoplasia;Other, specify;Cleft 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

C15558 Imaging angiography method type ImgAngioMethdTyp Type of angiography method performed Type of angiography method performed Contrast enhanced;Time of flight;Other, specify;Contrast enhanced;Time of flight;Other, specify Contrast enhanced;Time of flight;Other, specify;Contrast enhanced;Time of flight;Other, specify 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

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

C02309 Serious adverse event indicator SeriousAdvrsEvntInd The indicator of whether the adverse event is serious. The indicator of whether the adverse event is serious. Yes;No;Unknown Yes;No;Unknown Alphanumeric Adult;Pediatric Supplemental 3.00 2013-08-28 16:08:00.453 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

Single Pre-Defined Value Selected

2199908 DeBaun Forms
C13957 Microembolic signal intensity value MicroembolSignalIntensVal Indicates microembolic signal intensity value (dB) Indicates microembolic signal intensity value (dB) 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

decibel
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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C13243 National Institutes of Health Stroke Scale (NIHSS) - Dysarthria score NIHSSDysarthriaScore Dysarthria assessed using the NIH Stroke Scale (NIHSS) Dysarthria assessed using the NIH Stroke Scale (NIHSS) 0;1;2;UN;0;1;2;UN Normal;Mild to moderate: patient slurs at least some words and, at worst, can be understood with some difficulty.;Severe: patient's speech is so slurred as to be unintelligible in the absence of or out of proportion to any dysphasia, or is mute/anarthric.;Intubated or other physical barrier, explain;Normal;Mild to moderate: patient slurs at least some words and, at worst, can be understood with some difficulty.;Severe: patient's speech is so slurred as to be unintelligible in the absence of or out of proportion to any dysphasia, or is mute/anarthric.;Intubated or other physical barrier, explain 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
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

Free-Form Entry

0
C13893 Imaging vessel angiography venous findings type ImgVesselAngioVenousFindTyp Indicates vessel angiography venous findings type Indicates vessel angiography venous findings type Superior Sagittal Sinus;Inferior Sagittal Sinus;Straight Sinus;Transverse Sinus;Sigmoid Sinus;Jugular Bulb;Cavernous Sinus;Internal Cerebral Vein;Vein of Galen;Frontal Cortical Vein;Parietal Cortical Vein;Temporal Cortical Vein;Occipital Cortical Vein Superior Sagittal Sinus;Inferior Sagittal Sinus;Straight Sinus;Transverse Sinus;Sigmoid Sinus;Jugular Bulb;Cavernous Sinus;Internal Cerebral Vein;Vein of Galen;Frontal Cortical Vein;Parietal Cortical Vein;Temporal Cortical Vein;Occipital Cortical Vein 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

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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C13904 Imaging interpretation offsite media type ImgInterpretOffsiteMediaTyp Indicates imaging offsite media type Indicates imaging offsite media type Video;Print;Digital Video;Print;Digital 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

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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C14051 Microembolic signal end time MicroembolSignalEndTime Indicates microembolic signal end time Indicates microembolic signal end 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

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C56438 Wechsler Abbreviated Scale of Intelligence - Second Edition (WASI-II) - Full Scale IQ 2 composite score WASIIIFullScaleIQ2CompScore The subject's Full Scale IQ composite score for only 2 subtests (Vocabulary and Matrix Reasoning), converted from his/her Full Scale T score for two subtests, as part of the Wechsler Abbreviated Scale of Intelligence - Second Edition (WASI-II). The subject's Full Scale IQ composite score for only 2 subtests (Vocabulary and Matrix Reasoning), converted from his/her Full Scale T score for two subtests, as part of the Wechsler Abbreviated Scale of Intelligence - Second Edition (WASI-II). Numeric Values Adult;Pediatric Supplemental 1.00 2017-06-12 13:02:44.0 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

Free-Form Entry

40 160
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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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

Free-Form Entry

0 500 kilogram 2179689 DeBaun Forms
C13936 Intima media thickness (IMT) artery type IMTArteryTyp Indicates intima media thickness (IMT) artery for diameter Indicates intima media thickness (IMT) artery for diameter CCA - right;CCA - left;CCA - right;CCA - left Common carotid artery - right;Common carotid artery - left;Common carotid artery - right;Common carotid artery - left 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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C12506 Imaging eye abnormality type ImgEyeAbnrmlyTyp The type of eye abnormalities The type of eye abnormalities Optic nerve abnormalities;Microphthalmia;Cataract Optic nerve abnormalities;Microphthalmia;Cataract 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

C17409 Visit date VisitDate Date of interview or visit (actually the date when data in the form were captured) Date of interview or visit 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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DeBaun Forms LB VISDAT

Visit Date

Visit Date

What [is/was] the date of the visit?

N/A Char Record the [date/start date] of the visit using DD-MON-YYYY format. Prompt
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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C08023 Imaging abnormal finding text ImgAbnrmlFindTxt Text description of the abnormal findings on the imaging study Text description of the abnormal findings on the imaging study Alphanumeric Adult;Pediatric Supplemental 3.00 2013-07-24 11:38:01.2 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other 255

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C14006 Imaging stenosis percentage value ImgStenosisPercentageVal Indicates stenosis percentage value Indicates stenosis percentage value 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 99 percent
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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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
491 results.
CSV