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

Free-Form Entry

C13240 National Institutes of Health Stroke Scale (NIHSS) - Limb ataxia score NIHSSLimbAtaxiaScore Limb ataxia assessed using the NIH Stroke Scale (NIHSS) Limb ataxia assessed using the NIH Stroke Scale (NIHSS) 0;1;2;UN;0;1;2;UN Absent;Present in one limb;Present in two limbs;Amputation or joint fusion, explain;Absent;Present in one limb;Present in two limbs;Amputation or joint fusion, 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

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
C18903 Vasomotor response (VMR) vessel anatomic other text VMRVesselAntmicOTH The free-text field related to 'Vasomotor response (VMR) vessel anatomic site' specifying other text. Indicates vasomotor response (VMR) vessel type The free-text field related to 'Vasomotor response (VMR) vessel anatomic site' specifying other text. Indicates vasomotor response (VMR) vessel type 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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C10609 Hospitalization reason HospitRsn Reason why the participant/subject was hospitalized, excluding all surgeries Reason why the participant/subject was hospitalized, excluding all surgeries Pneumonia or Respiratory;Dehydration;Trauma;Fracture;Cardiomyopathy/Arrhythmia;Failure to Thrive;Other, specify;Infection other than pneumonia;Seizures;Cardiovascular Pneumonia or Respiratory;Dehydration;Trauma;Fracture;Cardiomyopathy/Arrhythmia;Failure to Thrive;Other, specify;Infection other than pneumonia;Seizures;Cardiovascular Alphanumeric Adult;Pediatric Supplemental 3.00 2013-07-25 08:54:08.2 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

Multiple Pre-Defined Values Selected

DeBaun Forms
C56397 Conners Continuous Performance Test 3rd Edition (CPT3) - Vigilance commission inter-stimulus interval change value ConnersCPT3VigCommISIChngVal The number of incorrect responses to non-targets by inter-stimulus interval (ISI), as part of the Conners Continuous Performance Test 3rd Edition (CPT3). The number of incorrect responses to non-targets by inter-stimulus interval (ISI), as part of the Conners Continuous Performance Test 3rd Edition (CPT3). Numeric Values Adult;Pediatric Supplemental 1.00 2017-06-09 15:48:46.0 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

Free-Form Entry

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

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
C00321 Medical history for body system indicator MedclHistBodySysInd Indicator of whether the participant/subject has a history of medical problems/conditions for the specific body system. Indicator of whether the participant/subject has a history of medical problems/conditions for the specific body system. Yes;No;Unknown Yes;No;Unknown Alphanumeric Adult;Pediatric Supplemental 3.00 2013-07-22 16:57:17.79 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

Single Pre-Defined Value Selected

DeBaun Forms
C21493 Wechsler Adult Intelligence Scale IV (WAIS IV) - Digit span backward subtest item number WAISIVDSBItemNum Item number, as part of Wechsler Adult Intelligence Scale IV (WAIS IV) Digit Span Backward subtest Item number, as part of Wechsler Adult Intelligence Scale IV (WAIS IV) Digit Span Backward 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

C01522 Height measurement HgtMeasr Measurement of participant's/subject's height. Measurement of participant's/subject's height. 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

0 400 centimeter 649 DeBaun Forms
C21504 Wechsler Adult Intelligence Scale IV (WAIS IV) - Digit span sequencing subtest item score WAISIVDSSSubtestItemScore Item score, as part of Wechsler Adult Intelligence Scale IV (WAIS IV) Digit Span Sequencing subtest Item score, as part of Wechsler Adult Intelligence Scale IV (WAIS IV) Digit Span Sequencing subtest 0;1;2 0;1;2 Numeric Values Adult;Pediatric Supplemental 1.10 2018-07-30 00:00:00.0 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

Single Pre-Defined Value Selected

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

C12503 Imaging gray matter hyperintensity T2 fluid attenuated inversion recovery indicator ImgGryMtrHyperT2FLAIRInd Indicator of whether there is grey matter hyperintensity on T2/FLAIR (fluid attenuated inversion recovery) images Indicator of whether there is grey matter hyperintensity on T2/FLAIR images 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

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

C18715 Imaging radio frequency coil other text ImgRFCoilOTH The free-text field related to 'Imaging radio frequency coil type' specifying other text. Type of radio frequency (RF) coil(s) used for the body part scanned The free-text field related to 'Imaging radio frequency coil type' specifying other text. Type of radio frequency (RF) coil(s) used for the body part scanned 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

C04804 Hospital discharge date and time HospitDischgDateTime Date (and time, if applicable and known) the participant/subject was discharged from the hospital Date (and time, if applicable and known) the participant/subject was discharged from 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
C55776 Imaging ictal headache since onset duration ImagIctHeadSinceOnsetDur The duration of time since the onset of the subject's headache if it was ictal. The duration of time since the onset of the subject's headache if it was ictal. Numeric Values Adult;Pediatric Supplemental 1.00 2017-05-31 12:21:21.0 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

Free-Form Entry

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

C13458 Pediatric Stroke Outcomes Measure-Neuro Exam (PSOM-SNEVOct2003) - language deficit-production scale PSOMSNELangDefProdScale The scale for language deficit - production (including dysarthria) based on Pediatric Stroke Outcomes Measure-Neuro Exam (PSOM-SNEVOct2003). The scale for language deficit - production (including dysarthria) based on Pediatric Stroke Outcomes Measure-Neuro Exam (PSOM-SNEVOct2003). 0;0.5;1;2;0;0.5;1;2;0;0.5;1;2 None;Mild but no impact on function;Moderate with some impact on function;Severe or profound with missing function;None;Mild but no impact on function;Moderate with some impact on function;Severe or profound with missing function;None;Mild but no impact on function;Moderate with some impact on function;Severe or profound with missing function 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
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

C19805 Medical history endocrine osteoporosis indicator MedHistEndcrnOstprsisInd Indicator of history of osteoporosis Indicator of history of osteoporosis No;Yes No;Yes Alphanumeric Adult;Pediatric Supplemental 1.00 2015-02-05 00:00:00.0 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

Single Pre-Defined Value Selected

DeBaun Forms
C12467 Imaging magnetic resonance imaging performed multiple indicator ImgMRIPerfMultiInd Indicator as to whether or not multiple magnetic resonance imaging (MRI) sessions have been performed on the participant/subject Indicator as to whether or not multiple magnetic resonance imaging (MRI) sessions have been performed on the participant/subject Yes;No,single brain MRI;Unknown Yes;No,single brain MRI;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

C56417 Wechsler Abbreviated Scale of Intelligence - Second Edition (WASI-II) - Full Scale 2 T score sum value WASIIIFullScale2TScoreSumVal The sum of two of the subject's T scores (Vocabulary and Matrix Reasoning), as part of the Wechsler Abbreviated Scale of Intelligence - Second Edition (WASI-II). The sum of two of the subject's T scores (Vocabulary and Matrix Reasoning), as part of the Wechsler Abbreviated Scale of Intelligence - Second Edition (WASI-II). Numeric Values Adult;Pediatric Supplemental 1.00 2017-06-12 11:40:41.0 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

Free-Form Entry

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
C56435 Wechsler Abbreviated Scale of Intelligence - Second Edition (WASI-II) - Full Scale IQ 4 percentile rank value WASIIIFullScale4PrcntRankVal The percentile rank the subject placed in with respect to Full Scale IQ for all four subtests, as part of the Wechsler Abbreviated Scale of Intelligence - Second Edition (WASI-II). The percentile rank the subject placed in with respect to Full Scale IQ for all four subtests, as part of the Wechsler Abbreviated Scale of Intelligence - Second Edition (WASI-II). Numeric Values Adult;Pediatric Supplemental 1.00 2017-06-12 13:04:39.0 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

Free-Form Entry

0 100 percent
C02005 Study drug returned date and time StdyDrugRetrnDateTime Date (and time, if applicable and known) on which the study drug was returned Date (and time, if applicable and known) on which the study drug was returned Date or Date & Time Adult;Pediatric Supplemental 3.00 2013-07-18 16:35:19.49 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

Free-Form Entry

3164209 DeBaun Forms
C54606 Brief Test of Executive Function Second Edition (BRIEF 2) - Inhibit total raw scale score BRIEF2InhbtTtlRwSclScore Total score of the raw scale for the inhibit function, as part of the Brief Test of Executive Function Second Edition (BRIEF 2) Total score of the raw scale for the inhibit 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

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

C13198 Questionnaire for Verifying Stroke Free Status (QVSFS) - understanding status QVSFSUndstandStatus Have you ever suddenly lost the ability to understand what people were saying? Have you ever suddenly lost the ability to understand what people were saying? 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
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

Free-Form Entry

C18858 Imaging pons abnormality other text ImgPonsAbnrmlyOTH The free-text field related to 'Imaging pons abnormality type' specifying other text. The type of abnormality in the pons on the image The free-text field related to 'Imaging pons abnormality type' specifying other text. The type of abnormality in the pons on the image Alphanumeric Adult;Pediatric Supplemental 3.00 2013-07-24 11:38:01.2 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other 4000

Free-Form Entry

C08241 Imaging field of view axis 1 measurement ImgFieldViewAxis1Measr Axis 1 of the image that is visible through the camera at a particular position in orientation and space in millimeters Axis 1 of the image that is visible through the camera at a particular position in orientation and space in millimeters 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

millimeter
C56384 Conners Continuous Performance Test 3rd Edition (CPT3) - Inattentiveness hit reaction time standard deviation value ConnersCPT3InaHRTStDevVal The standard deviation of the subject's response speed consistency, as part of the Conners Continuous Performance Test 3rd Edition (CPT3). The standard deviation of the subject's response speed consistency, as part of the Conners Continuous Performance Test 3rd Edition (CPT3). Numeric Values Adult;Pediatric Supplemental 1.00 2017-06-09 15:33:41.0 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

Free-Form Entry

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

C13751 Imaging acquisition reason ImgAcquisitionRsn Describes why the imaging study was performed Describes why the imaging study was performed Diagnostic;Post-treatment;Monitoring;Other, specify;Diagnostic;Post-treatment;Monitoring;Other, specify Diagnostic;Post-treatment;Monitoring;Other, specify;Diagnostic;Post-treatment;Monitoring;Other, specify 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

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

Free-Form Entry

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
C21483 Wechsler Adult Intelligence Scale IV (WAIS IV) - Digit span forward subtest response text WAISIVDSFRespnsTxt Participant response, as part of Wechsler Adult Intelligence Scale IV (WAIS IV) Digit Span Forward subtest Participant response, as part of Wechsler Adult Intelligence Scale IV (WAIS IV) Digit Span Forward subtest Alphanumeric Adult;Pediatric Supplemental 1.00 2015-07-22 11:32:44.0 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other 50

Free-Form Entry

C12482 Imaging cortex lissencephaly (LIS type 1) thickness measurement ImgCortexLISThickMeasr The measurement of cortex thickness, in , of the lissencephaly (LIS type 1) site The measurement of cortex thickness, in , of the lissencephaly (LIS type 1) site 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

C56428 Wechsler Abbreviated Scale of Intelligence - Second Edition (WASI-II) - Verbal Comprehension confidence interval upper bound value WASIIIVerbCompConfIntrvlUppVal The upper bound of the subject's Verbal Comprehension confidence interval, as part of the Wechsler Abbreviated Scale of Intelligence - Second Edition (WASI-II). The upper bound of the subject's Verbal Comprehension 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

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
491 results.
CSV