CDE Detailed Report
Disease: Sickle Cell Disease
Sub-Domain: Outcomes and End Points
CRF: PhenX Toolkit: Stroke Impact

18 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
C59504 Pediatric National Institutes of Health Stroke Scale (PedNIHSS) - Dysarthria score PedNIHSSDysarthriaScore Dysarthria assessed using the Pediatric NIH Stroke Scale (PedNIHSS) Dysarthria assessed using the Pediatric NIH Stroke Scale (PedNIHSS) Dysarthria 0;1;2;9 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 Numeric Values PhenX Protocol: Pediatric NIH Stroke Scale (PedNIHSS) (#820802) Pediatric Proposed 3.00 2013-06-21 00:00:00.0 PhenX Toolkit: Stroke Impact/Outcome - Pediatric Outcomes and End Points Cerebrovascular Testing/Status

Single Pre-Defined Value Selected

PhenX Neurology, Quality of Life, and Health Services Specialty Collection Stroke Impact/Outcome 10
C59494 Pediatric National Institutes of Health Stroke Scale (PedNIHSS) - Level of consciousness secondary question score PedNIHSSLvlConscSecdryQScore Level of consciousness (LOC) questions assessed using the Pediatric NIH Stroke Scale (PedNIHSS) Level of consciousness (LOC) questions assessed using the Pediatric NIH Stroke Scale (PedNIHSS) LOC questions 0;1;2;0;1;2;0;1;2 Answers both questions correctly;Answers one question correctly;Answers neither question correctly;Answers both questions correctly;Answers one question correctly;Answers neither question correctly;Answers both questions correctly;Answers one question correctly;Answers neither question correctly Numeric values PhenX Protocol: Pediatric NIH Stroke Scale (PedNIHSS) (#820802) Pediatric Proposed 3.00 2013-06-21 00:00:00.0 PhenX Toolkit: Stroke Impact/Outcome - Pediatric Outcomes and End Points Cerebrovascular Testing/Status

Single Pre-Defined Value Selected

PhenX Neurology, Quality of Life, and Health Services Specialty Collection Stroke Impact/Outcome 1b
C59505 Pediatric National Institutes of Health Stroke Scale (PedNIHSS) - Extinction and inattention score PedNIHSSExtinctInattentScore Extinction and inattention assessed using the Pediatric NIH Stroke Scale (PedNIHSS) Extinction and inattention assessed using the Pediatric NIH Stroke Scale (PedNIHSS) Extinction and Inattention 0;1;2 No abnormality.;Visual, tactile, auditory, spatial, or personal inattention or extinction to bilateral simultaneous stimulation in one of the sensory modalities.;Profound hemi-inattention or extinction to more than one modality. Does not recognize own hand or orients to only one side of space. Numeric Values PhenX Protocol: Pediatric NIH Stroke Scale (PedNIHSS) (#820802) Pediatric Proposed 3.00 2013-06-21 00:00:00.0 PhenX Toolkit: Stroke Impact/Outcome - Pediatric Outcomes and End Points Cerebrovascular Testing/Status

Single Pre-Defined Value Selected

PhenX Neurology, Quality of Life, and Health Services Specialty Collection Stroke Impact/Outcome 11
C59495 Pediatric National Institutes of Health Stroke Scale (PedNIHSS) - Level of consciousness tertiary question score PedNIHSSLvlConscTertryQScore Level of consciousness (LOC) commands assessed using the Pediatric NIH Stroke Scale (PedNIHSS) Level of consciousness (LOC) commands assessed using the Pediatric NIH Stroke Scale (PedNIHSS) LOC commands 0;1;2;0;1;2;0;1;2 Performs both tasks correctly.;Performs one task correctly;Performs neither task correctly;Performs both tasks correctly.;Performs one task correctly;Performs neither task correctly;Performs both tasks correctly.;Performs one task correctly;Performs neither task correctly Numeric values PhenX Protocol: Pediatric NIH Stroke Scale (PedNIHSS) (#820802) Pediatric Proposed 3.00 2013-06-21 00:00:00.0 PhenX Toolkit: Stroke Impact/Outcome - Pediatric Outcomes and End Points Cerebrovascular Testing/Status

Single Pre-Defined Value Selected

PhenX Neurology, Quality of Life, and Health Services Specialty Collection Stroke Impact/Outcome 1c
C59506 Pediatric National Institutes of Health Stroke Scale (PedNIHSS) - Motor arm amputation text PedNIHSSMotArmAmpTxt The text field for explaining the amputation or joint fusion for question related to motor ability of the arm (both left and right) assessed using the Pediatric NIH Stroke Scale (PedNIHSS). The text field for explaining the amputation or joint fusion for question related to motor ability of the arm (both left and right) assessed using the Pediatric NIH Stroke Scale (PedNIHSS). Amputation, joint fusion explain: Alphanumeric PhenX Protocol: Pediatric NIH Stroke Scale (PedNIHSS) (#820802) Pediatric Proposed 3.00 2013-06-21 00:00:00.0 PhenX Toolkit: Stroke Impact/Outcome - Pediatric Outcomes and End Points Cerebrovascular Testing/Status 4000

Free-Form Entry

PhenX Neurology, Quality of Life, and Health Services Specialty Collection Stroke Impact/Outcome 5.9
C59496 Pediatric National Institutes of Health Stroke Scale (PedNIHSS) - Best gaze score PedNIHSSLvlConscBestGazeScore Best gaze assessed using the Pediatric NIH Stroke Scale (PedNIHSS) Best gaze assessed using the Pediatric NIH Stroke Scale (PedNIHSS) Best gaze 0;1;2;0;1;2 Normal;Partial gaze palsy. This score is given when gaze is abnormal in one or both eyes, but where forced deviation or total gaze paresis are not present;Forced deviation, or total gaze paresis not overcome by the oculocephalic maneuver;Normal;Partial gaze palsy. This score is given when gaze is abnormal in one or both eyes, but where forced deviation or total gaze paresis are not present;Forced deviation, or total gaze paresis not overcome by the oculocephalic maneuver Numeric Values PhenX Protocol: Pediatric NIH Stroke Scale (PedNIHSS) (#820802) Pediatric Proposed 3.00 2013-06-21 00:00:00.0 PhenX Toolkit: Stroke Impact/Outcome - Pediatric Outcomes and End Points Cerebrovascular Testing/Status

Single Pre-Defined Value Selected

PhenX Neurology, Quality of Life, and Health Services Specialty Collection Stroke Impact/Outcome 2
C59507 Pediatric National Institutes of Health Stroke Scale (PedNIHSS) - Motor leg amputation text PedNIHSSMotLegAmpTxt The text field for explaining the amputation or joint fusion for question related to motor ability of the leg (both left and right) assessed using the Pediatric NIH Stroke Scale (PedNIHSS). The text field for explaining the amputation or joint fusion for question related to motor ability of the leg (both left and right) assessed using the Pediatric NIH Stroke Scale (PedNIHSS). Amputation, joint fusion explain: Alphanumeric PhenX Protocol: Pediatric NIH Stroke Scale (PedNIHSS) (#820802) Pediatric Proposed 4.00 2015-04-27 00:00:00.0 PhenX Toolkit: Stroke Impact/Outcome - Pediatric Outcomes and End Points Cerebrovascular Testing/Status 4000

Free-Form Entry

PhenX Neurology, Quality of Life, and Health Services Specialty Collection Stroke Impact/Outcome 6.9
C59497 Pediatric National Institutes of Health Stroke Scale (PedNIHSS) - Visual field score PedNIHSSLvlConscVisuFldScore Visual fields assessed using the Pediatric NIH Stroke Scale (PedNIHSS) Visual fields assessed using the Pediatric NIH Stroke Scale (PedNIHSS) Visual 0;1;2;3 No visual loss;Partial hemianopia;Complete hemianopia;Bilateral hemianopia (blind including cortical blindness) Numeric Values PhenX Protocol: Pediatric NIH Stroke Scale (PedNIHSS) (#820802) Pediatric Proposed 3.00 2013-06-21 00:00:00.0 PhenX Toolkit: Stroke Impact/Outcome - Pediatric Outcomes and End Points Cerebrovascular Testing/Status

Single Pre-Defined Value Selected

PhenX Visual fields assessed using the Pediatric NIH Stroke Scale (PedNIHSS) Stroke Impact/Outcome 3
C59508 Pediatric National Institutes of Health Stroke Scale (PedNIHSS) - Limb ataxia amputation text PedNIHSSLimbAtaxiaAmputTxt The text field for explaining the amputation or joint fusion for question related to Limb ataxia assessed using the Pediatric NIH Stroke Scale (PedNIHSS). The text field for explaining the amputation or joint fusion for question related to Limb ataxia assessed using the Pediatric NIH Stroke Scale (PedNIHSS). Amputation, joint fusion explain: Alphanumeric PhenX Protocol: Pediatric NIH Stroke Scale (PedNIHSS) (#820802) Pediatric Proposed 4.00 2015-04-27 00:00:00.0 PhenX Toolkit: Stroke Impact/Outcome - Pediatric Outcomes and End Points Cerebrovascular Testing/Status 4000

Free-Form Entry

PhenX Neurology, Quality of Life, and Health Services Specialty Collection Stroke Impact/Outcome 7.9
C59498 Pediatric National Institutes of Health Stroke Scale (PedNIHSS) - Facial palsy score PedNIHSSLvlConscFaclPlsyScore Facial palsy assessed using the Pediatric NIH Stroke Scale (PedNIHSS) Facial palsy assessed using the Pediatric NIH Stroke Scale (PedNIHSS) Facial palsy 0;1;2;3 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) Numeric Values PhenX Protocol: Pediatric NIH Stroke Scale (PedNIHSS) (#820802) Pediatric Proposed 3.00 2013-06-21 00:00:00.0 PhenX Toolkit: Stroke Impact/Outcome - Pediatric Outcomes and End Points Cerebrovascular Testing/Status

Single Pre-Defined Value Selected

PhenX Neurology, Quality of Life, and Health Services Specialty Collection Stroke Impact/Outcome 4
C59509 Pediatric National Institutes of Health Stroke Scale (PedNIHSS) - Dysarthria intubation text PedNIHSSDysarthriaIntubTxt The text field for explaining the intubation or other physical barrier related to Dysarthria assessed using the Pediatric NIH Stroke Scale (PedNIHSS). The text field for explaining the intubation or other physical barrier related to Dysarthria assessed using the Pediatric NIH Stroke Scale (PedNIHSS). Intubated or other physical barrier, explain: Alphanumeric PhenX Protocol: Pediatric NIH Stroke Scale (PedNIHSS) (#820802) Pediatric Proposed 4.00 2015-04-27 00:00:00.0 PhenX Toolkit: Stroke Impact/Outcome - Pediatric Outcomes and End Points Cerebrovascular Testing/Status 4000

Free-Form Entry

PhenX Neurology, Quality of Life, and Health Services Specialty Collection Stroke Impact/Outcome 10.9
C59499 Pediatric National Institutes of Health Stroke Scale (PedNIHSS) - Motor arm score PedNIHSSLvlConscMotArmScore Motor ability of the arm (both left and right) assessed using the Pediatric NIH Stroke Scale (PedNIHSS) Motor ability of the arm (both left and right) assessed using the Pediatric NIH Stroke Scale (PedNIHSS) Motor arm 0;1;2;3;4;9 No drift: limb holds 90 (or 45) degrees for full 10 seconds;Drift: limb holds 90 (or 45) degrees, but drifts down before full 10 seconds, does not hit bed or other support;Some effort against gravity: limb cannot get to or maintain (if cued) 90 (or 45) degrees, drifts down to bed, but has some effort against gravity.;No effort against gravity: limb falls;No movement;Amputation, joint fusion explain Numeric Values PhenX Protocol: Pediatric NIH Stroke Scale (PedNIHSS) (#820802) Pediatric Proposed 3.00 2013-06-21 00:00:00.0 PhenX Toolkit: Stroke Impact/Outcome - Pediatric Outcomes and End Points Cerebrovascular Testing/Status

Single Pre-Defined Value Selected

PhenX Neurology, Quality of Life, and Health Services Specialty Collection Stroke Impact/Outcome 5
C59500 Pediatric National Institutes of Health Stroke Scale (PedNIHSS) - Motor leg score PedNIHSSLvlConscMotLegScore Motor ability of the leg (both left and right) assessed using the Pediatric NIH Stroke Scale (PedNIHSS) Motor ability of the leg (both left and right) assessed using the Pediatric NIH Stroke Scale (PedNIHSS) Motor leg 0;1;2;3;4;9 No drift: leg holds 30 degrees position for full 5 seconds.;Drift: leg falls by the end of the 5 second period but does not hit bed.;Some effort against gravity: leg falls to bed by 5 seconds, but has some effort against gravity.;No effort against gravity, leg falls to bed immediately.;No movement;Amputation, joint fusion explain Numeric Values PhenX Protocol: Pediatric NIH Stroke Scale (PedNIHSS) (#820802) Pediatric Proposed 3.00 2013-06-21 00:00:00.0 PhenX Toolkit: Stroke Impact/Outcome - Pediatric Outcomes and End Points Cerebrovascular Testing/Status

Single Pre-Defined Value Selected

PhenX Neurology, Quality of Life, and Health Services Specialty Collection Stroke Impact/Outcome 6
C59501 Pediatric National Institutes of Health Stroke Scale (PedNIHSS) - Limb ataxia score PedNIHSSLimbAtaxiaScore Limb ataxia assessed using the Pediatric NIH Stroke Scale (PedNIHSS) Limb ataxia assessed using the Pediatric NIH Stroke Scale (PedNIHSS) Limb ataxia 0;1;2;9 Absent;Present in one limb;Present in two limbs;Amputation, joint fusion explain Numeric Values PhenX Protocol: Pediatric NIH Stroke Scale (PedNIHSS) (#820802) Pediatric Proposed 3.00 2013-06-21 00:00:00.0 PhenX Toolkit: Stroke Impact/Outcome - Pediatric Outcomes and End Points Cerebrovascular Testing/Status

Single Pre-Defined Value Selected

PhenX Neurology, Quality of Life, and Health Services Specialty Collection Stroke Impact/Outcome 7
C59502 Pediatric National Institutes of Health Stroke Scale (PedNIHSS) - Sensory score PedNIHSSSensoryScore Sensory abilities assessed using the Pediatric NIH Stroke Scale (PedNIHSS) Sensory abilities assessed using the Pediatric NIH Stroke Scale (PedNIHSS) Sensory 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. Numeric Values PhenX Protocol: Pediatric NIH Stroke Scale (PedNIHSS) (#820802) Pediatric Proposed 3.00 2013-06-21 00:00:00.0 PhenX Toolkit: Stroke Impact/Outcome - Pediatric Outcomes and End Points Cerebrovascular Testing/Status

Single Pre-Defined Value Selected

PhenX Neurology, Quality of Life, and Health Services Specialty Collection Stroke Impact/Outcome 8
C02411 Laterality type LatTyp Laterality type relative to the anatomic site of the body examined or affected Laterality type relative to the anatomic site of the body examined or affected Left/Right Left;Right Left;Right Alphanumeric PhenX Protocol: Pediatric NIH Stroke Scale (PedNIHSS) (#820802) Pediatric Proposed 3.00 2013-08-28 16:08:00.453 PhenX Toolkit: Stroke Impact/Outcome - Pediatric Outcomes and End Points Cerebrovascular Testing/Status

Single Pre-Defined Value Selected

C59503 Pediatric National Institutes of Health Stroke Scale (PedNIHSS) - Best language score PedNIHSSBestLangScore Language ability assessed using the Pediatric NIH Stroke Scale (PedNIHSS) Language ability assessed using the Pediatric NIH Stroke Scale (PedNIHSS) Best language 0;1;2;3 No aphasia, normal;Mild to moderate aphasia: some obvious loss of fluency or facility of comprehension, without significant limitation on ideas expressed or form of expression. Reduction of speech and/or comprehension, however, makes conversation about provided material difficult or impossible. For example in conversation about provided materials examiner can identify picture or naming card from patient's response.;Severe aphasia: all communication is through fragmentary expression, great need for inference, questioning, and guessing by the listener. Range of information that can be exchanged is limited: listener carries burden of communication. Examiner cannot identify materials provided from patient response.;Mute, global aphasia: no usable speech or auditory comprehension. Numeric Values PhenX Protocol: Pediatric NIH Stroke Scale (PedNIHSS) (#820802) Pediatric Proposed 3.00 2013-06-21 00:00:00.0 PhenX Toolkit: Stroke Impact/Outcome - Pediatric Outcomes and End Points Cerebrovascular Testing/Status

Single Pre-Defined Value Selected

PhenX Neurology, Quality of Life, and Health Services Specialty Collection Stroke Impact/Outcome 9
C59493 Pediatric National Institutes of Health Stroke Scale (PedNIHSS) - Level of consciousness primary question score PedNIHSSLvlConscPrimryQScore Level of consciousness assessed using the Pediatric NIH Stroke Scale (PedNIHSS) Level of consciousness assessed using the Pediatric NIH Stroke Scale (PedNIHSS) Level of consciousness 0;1;2;3 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 Numeric Values PhenX Protocol: Pediatric NIH Stroke Scale (PedNIHSS) (#820802) Pediatric Proposed 3.00 2013-06-21 00:00:00.0 PhenX Toolkit: Stroke Impact/Outcome - Pediatric Outcomes and End Points Cerebrovascular Testing/Status

Single Pre-Defined Value Selected

PhenX Neurology, Quality of Life, and Health Services Specialty Collection Stroke Impact/Outcome 1a
18 results.
CSV