CDE Detailed Report
Disease: Sickle Cell Disease
Sub-Domain: Additional Proposed Instruments
CRF: Miscellaneous Sickle Cell-related CDEs

Displaying 251 - 300 of 491
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
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

Free-Form Entry

0 999 millimeter of mercury
C02209 Informed consent obtained indicator InfConsntObtInd Indicator of whether informed consent was obtained for the participant/subject to participate in the clinical research study. Indicator of whether informed consent was obtained for the participant/subject to participate in the clinical research study Yes;No;Unknown Yes;No;Unknown Alphanumeric Adult;Pediatric Supplemental 3.00 2013-07-18 16:35:19.49 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

Single Pre-Defined Value Selected

2186028 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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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

C13237 National Institutes of Health Stroke Scale (NIHSS) - Facial palsy score NIHSSLvlConscFaclPlsyScore Facial palsy assessed using the NIH Stroke Scale (NIHSS) Facial palsy assessed using the NIH Stroke Scale (NIHSS) 0;1;2;3;UN;0;1;2;3;UN Normal symmetrical movement;Minor paralysis (flattened nasolabial fold, asymmetry on smiling);Partial paralysis (total or near total paralysis of lower face);Complete paralysis of one or both sides (absence of facial movement in the upper and lower face);Unexaminable (intubated/paralyzed);Normal symmetrical movement;Minor paralysis (flattened nasolabial fold, asymmetry on smiling);Partial paralysis (total or near total paralysis of lower face);Complete paralysis of one or both sides (absence of facial movement in the upper and lower face);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

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
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

C10568 Imaging radio frequency coil channel count ImgRFCoilChannelCt Number of the coil channels in the radio frequency (RF) coil used for the imaging scan Number of the coil channels in the radio frequency (RF) coil used for the imaging scan 1;8;12;16;24;32;Other, specify;1;8;12;16;24;32;Other, specify Single coil;8 channels;12 channels;16 channels;24 channels;32 channels;Other, specify;Single coil;8 channels;12 channels;16 channels;24 channels;32 channels;Other, specify Alphanumeric Adult;Pediatric Supplemental 3.00 2013-07-24 11:38:01.2 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

Single Pre-Defined Value Selected

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

C56439 Wechsler Abbreviated Scale of Intelligence - Second Edition (WASI-II) - Full Scale IQ 2 percentile rank value WASIIIFullScale2PrcntRankVal The percentile rank the subject placed in with respect to Full Scale IQ for two subtests (Vocabulary and Matrix Reasoning), 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 two subtests (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 13:04:39.0 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

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0 100 percent
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

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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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

C01507 Blood pressure diastolic measurement BldPressrDiastlMeasr Measurement of pressure of the participant's/subject's blood against the artery walls during diastole (the relaxation phase) in millimeters of mercury (mmHg) Measurement of pressure of the participant's/subject's blood against the artery walls during diastole (the relaxation phase) in millimeters of mercury (mmHg) 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

0 300 millimeter of mercury 2004291 DeBaun Forms
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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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

C12500 Imaging corpus callosum type indicator ImgCrpsClsmTypInd The condition of the corpus callosum fibers The condition of the corpus callosum fibers Involved;Spared Involved;Spared 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

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

Free-Form Entry

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

C02495 Imaging scanner strength value ImgScannerStrgthVal Value, in Tesla (T), of the scanner's magnetic field strength used for the scan being reported Value, in Tesla (T), of the scanner's magnetic field strength used for the scan being reported 1.5T;3.0T;4.0T;7.0T;Other, specify;1.5T;3.0T;4.0T;7.0T;Other, specify 1.5T;3.0T;4.0T;7.0T;Other, specify;1.5T;3.0T;4.0T;7.0T;Other, specify 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

Tesla
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

Free-Form Entry

0
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
C13248 National Institutes of Health Stroke Scale (NIHSS) Supplemental - Limb sensory loss status NIHSSSupLimbSensoryLossStatus The indicator to determine if any limbs have sensory loss The indicator to determine if any limbs have sensory loss 0;1;2 Normal: no sensory loss.;Mild to moderate sensory loss: patient feels pinprick is less sharp or is dull on the affected side, or there is a loss of superficial pain with pinprick but patient is aware he/she is being touched.;Severe to total sensory loss: patient is not aware of being touched in the face, arm, and leg. 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

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

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
C11026 Neuromuscular Exam Muscle weakness indicator NeuromuExmCranlMuscleWeaknInd Indicator whether there is muscle weakness in the muscle or muscle group examined Whether there is muscle weakness in the muscle or muscle group examined Yes;No;Not assessed;Unknown Yes;No;Not assessed;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

DeBaun Forms
C17526 Friedreich's Ataxia Rating Scale (FARS) - neurological exam peripheral deep tendon reflex biceps jerk right score FARSPNSNeuExDTenRefBicJRtScore Score for right-side biceps jerk in the peripheral nervous system section of the neurological exam, as part of the Friedreich's Ataxia Rating Scale (FARS). Score for right-side biceps jerk in the peripheral nervous system section of the neurological exam, as part of the Friedreich's Ataxia Rating Scale (FARS). 0;1;2;3;4;0;1;2;3;4;0;1;2;3;4 0 - absent;1 - hyporeflexia;2 - normal;3 - hyperreflexia;4 - pathologic hyperreflexia;0 - absent;1 - hyporeflexia;2 - normal;3 - hyperreflexia;4 - pathologic hyperreflexia;0 - absent;1 - hyporeflexia;2 - normal;3 - hyperreflexia;4 - pathologic hyperreflexia Numeric Values Adult;Pediatric Supplemental 3.00 2013-07-15 16:08:48.687 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

Single Pre-Defined Value Selected

DeBaun Forms
C12479 Imaging cortex-pachygyria site type ImgCortexPachygyriaSiteTyp The anatomical site(s) of the cortex-pachygyria The anatomical site(s) of the cortex-pachygyria Temporal;Frontoparietal;Occipital Temporal;Frontoparietal;Occipital 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

C18611 Imaging field of view axis 2 measurement ImgFieldViewAxis2Measr Axis 2 of the image that is visible through the camera at a particular position in orientation and space in millimeters Axis 2 of the image that is visible through the camera at a particular position in orientation and space in millimeters Numeric Values Adult;Pediatric Supplemental 1.00 2013-09-12 00:00:00.0 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

Free-Form Entry

millimeter
C14015 Microembolic signal count MicroembolSignalCt Numeric value counting the number of microembolic signals. Indicates microembolic signal number Numeric Values Adult;Pediatric Supplemental 3.00 2013-06-21 00:00:00.0 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

Free-Form Entry

0 999
C01702 Pregnancy test date and time PregTestDateTime The date (and time if applicable and known) when the pregnancy test was performed The date (and time if applicable and known) when the pregnancy test was performed 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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DeBaun Forms
C54693 PROMIS - Global Health carry out physical activity scale PROMISGlbHlthCrryOutPHysActScl Scale related to an individual's rating of his/her ability to carry out everyday physical activities such as walking, climbing stairs, carrying groceries, or moving a chair, as part of the PROMIS Global Health Scale related to an individual's rating of his/her ability to carry out everyday physical activities such as walking, climbing stairs, carrying groceries, or moving a chair, as part of the PROMIS Global Health 1;2;3;4;5;1;2;3;4;5 Excellent;Very good;Good;Fair;Poor;Excellent;Very good;Good;Fair;Poor Alphanumeric Adult;Pediatric Supplemental 1.00 2017-04-07 15:34:25.0 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

Single Pre-Defined Value Selected

C13913 Imaging plaque motion result ImgPlaqMotionReslt Indicates plaque motion Indicates plaque motion Alphanumeric Adult;Pediatric Supplemental 3.00 2013-06-21 00:00:00.0 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other 255

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C13195 Questionnaire for Verifying Stroke Free Status (QVSFS) - numbness status QVSFSNumbStatus Have you ever had sudden numbness or a dead feeling on one side of your body? Have you ever had sudden numbness or a dead feeling on one side of your body? 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
C19166 Special care unit admittance indicator SCUAddmittanceInd Indicator for the admittance of participant to special care unit, including any Intensive Care or Step-Down Unit Indicator for the admittance of participant to special care unit, including any Intensive Care or Step-Down Unit No;Yes No;Yes Alphanumeric Adult;Pediatric Supplemental 1.00 2014-05-29 13:03:57.0 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

Single Pre-Defined Value Selected

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

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DeBaun Forms
C08238 Imaging repetition gap value ImgRepetitionGapVal Duration between successive pulse sequences, in milliseconds, applied to the same slice during imaging acquisition Duration between successive pulse sequences, in milliseconds, applied to the same slice 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

Free-Form Entry

millisecond
C56410 Wechsler Abbreviated Scale of Intelligence - Second Edition (WASI-II) - Block Design T score WASIIIBDTScore The T score converted from the raw score that the subject received on the Block Design subtest of the Wechsler Abbreviated Scale of Intelligence - Second Edition (WASI-II) . The T score converted from the raw score that the subject received on the Block Design 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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20 80
C13945 Imaging spectrum depth measurement ImgSpectrumDepthMeasr Indicates spectrum depth measurement (mm) Indicates spectrum depth measurement (mm) Numeric Values Adult;Pediatric Supplemental 3.00 2013-06-21 00:00:00.0 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

Free-Form Entry

0 999 millimeter
C13469 Stroke Adjudication Worksheet - neuroimaging indicator StrokeAdjudWksNeuroimagInd The indicator for whether neuro-imaging done for this stroke event. The indicator for whether neuro-imaging done for this stroke event. 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

DeBaun Forms
C21498 Wechsler Adult Intelligence Scale IV (WAIS IV) - Digit span backward subtest total raw score WAISIVDSBTtlScore Total raw score, as part of Wechsler Adult Intelligence Scale IV (WAIS IV) Digit Span Backward subtest Total raw score, as part of Wechsler Adult Intelligence Scale IV (WAIS IV) Digit Span Backward subtest Numeric Values Adult;Pediatric Supplemental 1.00 2015-07-22 11:32:44.0 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

Free-Form Entry

0 16
C13956 Microembolic signal duration MicroembolSignalDur Indicates microembolic signal duration time (msec) Indicates microembolic signal duration time (msec) Numeric Values Adult;Pediatric Supplemental 3.00 2013-06-21 00:00:00.0 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

Free-Form Entry

0 999 millisecond
C00312 Body system category BodySysCat Category or grouping used in the comprehensive assessment of a participant/subject, which includes a subjective history taking component as well as an objective based structured interview and physical examination of all the body systems. Category or grouping used in the comprehensive assessment of a participant/subject, which includes a subjective history taking component as well as an objective based structured interview and physical examination of all the body systems. Allergic/Immunologic;Cardiovascular;Constitutional symptoms (e.g., fever, weight loss);Dermatological;Ears, Nose, Mouth, Throat;Endocrine;Eyes;Gastrointestinal;Gastrointestinal/Abdominal;Genitourinary;Gynecologic/Urologic/ Renal;Hematologic/Lymphatic;Hepatobiliary;Integumentary (skin and/or breast);Musculoskeletal;Musculoskeletal (separate from ALS exam);Neurological;Neurologic/CNS;Neurological (separate from ALS exam);Oncologic;Psychiatric;Pulmonary;Respiratory;Other, specify:;Allergic/Immunologic;Cardiovascular;Constitutional symptoms (e.g., fever, weight loss);Dermatological;Ears, Nose, Mouth, Throat;Endocrine;Eyes;Gastrointestinal;Gastrointestinal/Abdominal;Genitourinary;Gynecologic/Urologic/ Renal;Hematologic/Lymphatic;Hepatobiliary;Integumentary (skin and/or breast);Musculoskeletal;Musculoskeletal (separate from ALS exam);Neurological;Neurologic/CNS;Neurological (separate from ALS exam);Oncologic;Psychiatric;Pulmonary;Respiratory;Other, specify: Allergic/Immunologic;Cardiovascular;Constitutional symptoms (e.g., fever, weight loss);Dermatological;Ears, Nose, Mouth, Throat;Endocrine;Eyes;Gastrointestinal;Gastrointestinal/Abdominal;Genitourinary;Gynecologic/Urologic/ Renal;Hematologic/Lymphatic;Hepatobiliary;Integumentary (skin and/or breast);Musculoskeletal;Musculoskeletal (separate from ALS exam);Neurological;Neurologic/CNS;Neurological (separate from ALS exam);Oncologic;Psychiatric;Pulmonary;Respiratory;Other, specify:;Allergic/Immunologic;Cardiovascular;Constitutional symptoms (e.g., fever, weight loss);Dermatological;Ears, Nose, Mouth, Throat;Endocrine;Eyes;Gastrointestinal;Gastrointestinal/Abdominal;Genitourinary;Gynecologic/Urologic/ Renal;Hematologic/Lymphatic;Hepatobiliary;Integumentary (skin and/or breast);Musculoskeletal;Musculoskeletal (separate from ALS exam);Neurological;Neurologic/CNS;Neurological (separate from ALS exam);Oncologic;Psychiatric;Pulmonary;Respiratory;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

2002895 DeBaun Forms
C51670 School name SchoolName The name of the school that the subject currently attends, if applicable. The name of the school that the subject currently attends, if applicable. 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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C13892 Arterial occlusive lesion (AOL) recanalization score AOLRecanalScore The score as related to recanalization of the primary arterial occlusive lesion (AOL). The score as related to recanalization of the primary arterial occlusive lesion (AOL). 0;1;2;3;0;1;2;3;0;1;2;3 No recanalization of the primary occlusive lesion;Incomplete or partial recanalization of the primary occlusive lesion with no distal flow;Incomplete or partial recanalization of the primary occlusive lesion with any distal flow;Complete recanalization of the primary occlusion with any distal flow;No recanalization of the primary occlusive lesion;Incomplete or partial recanalization of the primary occlusive lesion with no distal flow;Incomplete or partial recanalization of the primary occlusive lesion with any distal flow;Complete recanalization of the primary occlusion with any distal flow;No recanalization of the primary occlusive lesion;Incomplete or partial recanalization of the primary occlusive lesion with no distal flow;Incomplete or partial recanalization of the primary occlusive lesion with any distal flow;Complete recanalization of the primary occlusion with any distal flow Numeric values Adult;Pediatric Supplemental 3.00 2013-06-21 00:00:00.0 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other

Single Pre-Defined Value Selected

C12490 Imaging ventricle abnormal indicator ImgVentrclAbnrmlInd Indicator of whether the ventricles appear normal or abnormal in the image studies Indicator of whether the ventricles appear 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

C18805 Hospitalization other text HospitOTH The free-text field related to 'Hospitalization reason' specifying other text. Reason why the participant/subject was hospitalized, excluding all surgeries The free-text field related to 'Hospitalization reason' specifying other text. Reason why the participant/subject was hospitalized, excluding all surgeries Alphanumeric Adult;Pediatric Supplemental 3.00 2013-07-25 08:54:08.2 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other 4000

Free-Form Entry

DeBaun Forms
C14027 Intracranial pressure (ICP) other measurement text ICPOtherMeasrTxt Indicates other method of measuring intracranial pressure (ICP) Indicates other method of measuring intracranial pressure (ICP) Alphanumeric Adult;Pediatric Supplemental 3.00 2013-06-21 00:00:00.0 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other 255

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C02212 Informed consent obtained date and time InformConsntObtnDateTime Date (and time, if applicable and known) on which the participant/subject (or the legal representative on behalf of the participant/subject) agrees to participate in a protocol, treatment, or other activity by signing an informed consent document. Date (and time, if applicable and known) on which the participant/subject (or the legal representative on behalf of the participant/subject) agrees to participate in a protocol, treatment, or other activity by signing an informed consent document. Date or Date & Time 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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2435038,656 DeBaun Forms
C55781 Imaging statistical test significance level outline text ImagStatTestSigLevOutTxt Text outlining the statistical test(s) and significance levels for comparison between the test and control groups of the imaging study. Text outlining the statistical test(s) and significance levels for comparison between the test and control groups of the imaging study. Alphanumeric Adult;Pediatric Supplemental 1.00 2017-05-31 12:39:11.0 Miscellaneous Sickle Cell-related CDEs Additional Proposed Instruments Other 255

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