CDE Detailed Report

Disease: Chiari I Malformation
Sub-Domain: Therapies
CRF: Chiari I Malformation Treatment Outcomes

Displaying 1 - 50 of 64
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 External Id Loinc External Id Snomed External Id caDSR External Id CDISC
C22560 Symptom cranial nerve surgical procedure change score SymptmCranlNerSurgProChaSco Score related to the change in the subject's cranial nerves scores. Score related to the change in the subject's cranial nerves scores. Cranial nerves change Numeric Values Adult;Pediatric Exploratory 1.00 2016-06-14 08:37:19.0 Chiari I Malformation Treatment Outcomes Therapies Treatment/Intervention Data

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C22397 Cerebrospinal fluid ventral space measurement CSFVenSpaceMeasr Measurement related to the minimal cerebrospinal fluid (CSF) space ventral to the spinal canal (SC) at the foramen magnum. Measurement related to the minimal cerebrospinal fluid (CSF) space ventral to the spinal canal (SC) at the foramen magnum. Post-op ventral CSF spaces Numeric Values

Measurement is horizontal at the foramen magnum to the ventral spinal cord (SC)

Adult;Pediatric Supplemental 1.00 2016-06-10 09:49:03.0 Chiari I Malformation Treatment Outcomes Therapies Treatment/Intervention Data

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0 10 millimeters
C22571 Surgical procedure complication hematoma indicator SurgProcCompHemaInd Indicator related to the complication of a hematoma. Indicator related to the complication of a hematoma. Hematoma No;Yes No;Yes Alphanumeric Adult;Pediatric Supplemental 1.00 2016-06-14 09:03:46.0 Chiari I Malformation Treatment Outcomes Therapies Treatment/Intervention Data

Single Pre-Defined Value Selected

C22522 Surgical procedure complication pseudomeningocele indicator SurgProcCompPseudInd Indicator related to the presence of a pseudomeningocele complication post-surgery. Indicator related to the presence of a pseudomeningocele complication post-surgery. Pseudomeningocele No;Yes No;Yes Alphanumeric Adult;Pediatric Supplemental 1.00 2016-06-13 15:40:27.0 Chiari I Malformation Treatment Outcomes Therapies Treatment/Intervention Data

Single Pre-Defined Value Selected

C22372 Imaging pre surgical procedure date ImgPreSurgProcedDate Date of pre-surgical imaging Date of pre-surgical imaging Comparison Image Date Date or Date & Time Adult;Pediatric Supplemental 1.00 2016-06-09 16:12:28.0 Chiari I Malformation Treatment Outcomes Therapies Treatment/Intervention Data

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C22550 Symptom general pain post surgical procedure score SymptmGenPainPostSurgProcSco Score related to the symptom scale of the subject's general pain post-surgery. Score related to the symptom scale of the subject's general pain post-surgery. General pain post score Numeric Values Adult;Pediatric Exploratory 1.00 2016-06-14 08:27:56.0 Chiari I Malformation Treatment Outcomes Therapies Treatment/Intervention Data

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C22561 Symptom activity daily life pre surgical procedure score SymptmADLPreSurgProcScore Score related to the symptom scale of the subject's activities of daily life (ADLs) pre-surgery. Score related to the symptom scale of the subject's activities of daily life (ADLs) pre-surgery. ADLs pre score Numeric Values Adult;Pediatric Exploratory 1.00 2016-06-14 08:42:21.0 Chiari I Malformation Treatment Outcomes Therapies Treatment/Intervention Data

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C22398 Cerebrospinal fluid ventral space change measurement CSFVenSpaceChngMeasr Measurement related to the change in width of the ventral cerebrospinal fluid (CSF) space at the foramen magnum. Measurement related to the change in width of the ventral cerebrospinal fluid (CSF) space at the foramen magnum. Change in CSF ventral space Numeric Values

Compared measurements are horizontal at the FM to the ventral SC

Adult;Pediatric Supplemental 1.00 2016-06-10 09:53:38.0 Chiari I Malformation Treatment Outcomes Therapies Treatment/Intervention Data

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-10 10 millimeters
C22572 Surgical procedure complication hematoma type SurgProcCompHemaTyp Type of hematoma the subject has, if any. Type of hematoma the subject has, if any. Hematoma None;Soft tissue;Cerebellar;Brainstem/spinal cord;Parenchymal;SDH None;Soft tissue;Cerebellar;Brainstem/spinal cord;Parenchymal;SDH Alphanumeric

Combined numbers are possible.

Adult;Pediatric Exploratory 1.00 2016-06-14 09:04:54.0 Chiari I Malformation Treatment Outcomes Therapies Treatment/Intervention Data

Multiple Pre-Defined Values Selected

C22524 Surgical procedure complication pseudomeningocele type SurgProcCompPseudTyp Type of pseudomeningocele found in the patient's brain, if any. Type of pseudomeningocele found in the patient's brain, if any. Pseudomeningocele No mass effect;Dural effacement;Neural compression No mass effect;Dural effacement;Neural compression Alphanumeric Adult;Pediatric Exploratory 1.00 2016-06-13 15:50:24.0 Chiari I Malformation Treatment Outcomes Therapies Treatment/Intervention Data

Multiple Pre-Defined Values Selected

C22373 Imaging pre surgical procedure type ImgPreSurgProcedTyp Type of pre-surgical imaging Type of pre-surgical imaging Comparison Image Type CT;MRI;Plain films CT;MRI;Plain films Alphanumeric Adult;Pediatric Supplemental-Highly Recommended 1.00 2016-06-09 16:14:29.0 Chiari I Malformation Treatment Outcomes Therapies Treatment/Intervention Data

Single Pre-Defined Value Selected

C22551 Symptom general pain surgical procedure change score SymptmGenPainSurgProcChaSco Score related to the change in the subject's general pain scores. Score related to the change in the subject's general pain scores. General pain change Numeric Values Adult;Pediatric Exploratory 1.00 2016-06-14 08:27:56.0 Chiari I Malformation Treatment Outcomes Therapies Treatment/Intervention Data

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C22562 Symptom activity daily life post surgical procedure score SymptmADLPostSurgProcScore Score related to the symptom scale of the subject's activities of daily life (ADLs) post-surgery. Score related to the symptom scale of the subject's activities of daily life (ADLs) post-surgery. ADLs post score Numeric Values Adult;Pediatric Exploratory 1.00 2016-06-14 08:42:21.0 Chiari I Malformation Treatment Outcomes Therapies Treatment/Intervention Data

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C22513 Cerebrospinal fluid Magendie patency measurement CSFMagPatMeasr Measurement of the foramen of Magendie, which drains cerebrospinal fluid (CSF) from the fourth ventrical to the cistema magna. Measurement of the foramen of Magendie, which drains cerebrospinal fluid (CSF) from the fourth ventrical to the cistema magna. Post-op Magendie patency Closed;Patent Closed;Patent Alphanumeric

Magendie is evaluated in its full length to the 4th ventricle, the narrowest point is documented.

Adult;Pediatric Supplemental 1.00 2016-06-13 15:01:58.0 Chiari I Malformation Treatment Outcomes Therapies Treatment/Intervention Data

Single Pre-Defined Value Selected

C22573 Surgical procedure complication mechanic displacement indicator SurgProcCompMechDispInd Indicator related to the complication of mechanical displacement. Indicator related to the complication of mechanical displacement. Mechanical displacement No;Yes No;Yes Alphanumeric

Treatment options listed under Treatment section

Adult;Pediatric Supplemental 1.00 2016-06-14 09:09:09.0 Chiari I Malformation Treatment Outcomes Therapies Treatment/Intervention Data

Single Pre-Defined Value Selected

C22525 Parenchymal morphology post surgical procedure brainstem shape type ParMorPostSurgProBrnstmTyp Type of the shape of the patient's brainstem post surgery. Type of the shape of the patient's brainstem post surgery. Post-op brainstem shape Normal;Compressed;Effaced Normal;Compressed;Effaced Alphanumeric Adult;Pediatric Supplemental 1.00 2016-06-13 15:58:19.0 Chiari I Malformation Treatment Outcomes Therapies Treatment/Intervention Data

Single Pre-Defined Value Selected

C22552 Symptom sensory deficit pre surgical procedure score SymptmSenDefPreSurgProcScore Score related to the symptom scale of the subject's sensory deficit pre-surgery. Score related to the symptom scale of the subject's sensory deficit pre-surgery. Sensory deficit pre score Numeric Values Adult;Pediatric Exploratory 1.00 2016-06-14 08:30:22.0 Chiari I Malformation Treatment Outcomes Therapies Treatment/Intervention Data

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C22376 Tonsil lowest position measurement TonLowPosMeasr Measurement of the lowest position of the patient's tonsils Measurement of the lowest position of the patient's tonsils Lowest tonsillar position Numeric Values

mm above (-) or below (-) the foramen magnum determined by pre-op landmarks. 0= measurement from low cortical border pre-op

Adult;Pediatric Supplemental-Highly Recommended 1.00 2016-06-09 16:17:18.0 Chiari I Malformation Treatment Outcomes Therapies Treatment/Intervention Data

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-20 50 millimeters
C22563 Symptom activity daily life surgical procedure change score SymptmADLSurgProcChaScore Score related to the change in the subject's activities of daily life (ADLs) scores. Score related to the change in the subject's activities of daily life (ADLs) scores. ADLs change Numeric Values Adult;Pediatric Exploratory 1.00 2016-06-14 08:42:21.0 Chiari I Malformation Treatment Outcomes Therapies Treatment/Intervention Data

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C22514 Cerebrospinal fluid Magendie patency change measurement CSFMagPatChangeMeasr Measurement related to the change in the patency of the foramen on Magendie. Measurement related to the change in the patency of the foramen on Magendie. Change in Magendie patency Wider;Opened;Closed;No change;Narrower Wider;Opened;Closed;No change;Narrower Alphanumeric

This qualitative scale allows for change in either direction in either direction and no change. It also differentiates newly closed or newly open.

Adult;Pediatric Supplemental 1.00 2016-06-13 15:09:01.0 Chiari I Malformation Treatment Outcomes Therapies Treatment/Intervention Data

Multiple Pre-Defined Values Selected

C22574 Surgical procedure complication mechanic displacement type SurgProcCompMechDispTyp Type of mechanical displacement the subject has, if any. Type of mechanical displacement the subject has, if any. Mechanical displacement None;Cranioplasty;Cervical instability None;Cranioplasty;Cervical instability Alphanumeric

Treatment options listed under Treatment section

Adult;Pediatric Supplemental 1.00 2016-06-14 09:11:50.0 Chiari I Malformation Treatment Outcomes Therapies Treatment/Intervention Data

Multiple Pre-Defined Values Selected

C22528 Surgical procedure complication cerebrospinal fluid disorder indicator SurgProcCompCSFDisInd Indicator related to the complication of a cerebrospinal fluid (CSF) disorder. Indicator related to the complication of a cerebrospinal fluid (CSF) disorder. CSF disorder No;Yes No;Yes Alphanumeric Adult;Pediatric Supplemental 1.00 2016-06-13 16:10:26.0 Chiari I Malformation Treatment Outcomes Therapies Treatment/Intervention Data

Single Pre-Defined Value Selected

C22553 Symptom sensory deficit post surgical procedure score SymptmSenDefPostSurgProcScore Score related to the symptom scale of the subject's sensory deficit post-surgery. Score related to the symptom scale of the subject's sensory deficit post-surgery. Sensory deficit post score Numeric Values Adult;Pediatric Exploratory 1.00 2016-06-14 08:30:22.0 Chiari I Malformation Treatment Outcomes Therapies Treatment/Intervention Data

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C22377 Tonsil right cerebellar measurement TonRtCerebMeasr Measurement related to the lowest position of the patient's right cerebellar tonsil. Measurement related to the lowest position of the patient's right cerebellar tonsil. Position of right cerebellar tonsil Numeric Values

"mm above (-) or below(-) the foramen magnum determined by pre-op landmarks. 0= measurement from low cortical border pre-op"

Adult;Pediatric Supplemental-Highly Recommended 1.00 2016-06-09 16:19:42.0 Chiari I Malformation Treatment Outcomes Therapies Treatment/Intervention Data

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-20 50 millimeters
C22564 Symptom depression pre surgical procedure score SymptmDepPreSurgProcSco Score related to the symptom scale of the subject's depression pre-surgery. Score related to the symptom scale of the subject's depression pre-surgery. Depression pre score Numeric Values Adult;Pediatric Exploratory 1.00 2016-06-14 08:44:48.0 Chiari I Malformation Treatment Outcomes Therapies Treatment/Intervention Data

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C22515 Syrinx anatomic change indicator SyrAntmicChangeInd Indicator related to the anatomic change in the syrinx. Indicator related to the anatomic change in the syrinx. Syrinx No;Yes No;Yes Alphanumeric Adult;Pediatric Supplemental 1.00 2016-06-13 15:12:19.0 Chiari I Malformation Treatment Outcomes Therapies Treatment/Intervention Data

Single Pre-Defined Value Selected

C22575 Surgical procedure performed date SurgProcPerfDate Date the surgical procedure was performed on the subject. Date the surgical procedure was performed on the subject. Treatment Date Date or Date & Time

Each surgical treatment should be sequential in number and dated separately

Adult;Pediatric Supplemental 1.00 2016-06-14 09:59:20.0 Chiari I Malformation Treatment Outcomes Therapies Treatment/Intervention Data

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C22530 Surgical procedure complication cerebrospinal fluid disorder type SurgProcCompCSFDisTyp Type of cerebrospinal fluid (CSF) disorder the patient has, if any. Type of cerebrospinal fluid (CSF) disorder the patient has, if any. CSF disorder Hydrocephalus;Pseudotumor Hydrocephalus;Pseudotumor Alphanumeric Adult;Pediatric Exploratory 1.00 2016-06-13 16:11:56.0 Chiari I Malformation Treatment Outcomes Therapies Treatment/Intervention Data

Single Pre-Defined Value Selected

C22554 Symptom sensory deficit surgical procedure change score SymptmSenDefSurgProcChaScore Score related to the change in the subject's sensory deficit scores. Score related to the change in the subject's sensory deficit scores. Sensory deficit change Numeric Values Adult;Pediatric Exploratory 1.00 2016-06-14 08:30:22.0 Chiari I Malformation Treatment Outcomes Therapies Treatment/Intervention Data

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C22390 Imaging post surgical procedure anatomical site ImgPostSurgProcedAnatSite Anatomical site of the post operative imaging. Anatomical site of the post operative imaging. Anatomical Area Horizontal;Temporal;Coronal;Lateral Horizontal;Temporal;Coronal;Lateral Alphanumeric Adult;Pediatric Supplemental 1.00 2016-06-10 09:24:27.0 Chiari I Malformation Treatment Outcomes Therapies Treatment/Intervention Data

Single Pre-Defined Value Selected

C22565 Symptom depression post surgical procedure score SymptmDepPostSurgProcSco Score related to the symptom scale of the subject's depression post-surgery. Score related to the symptom scale of the subject's depression post-surgery. Depression post score Numeric Values Adult;Pediatric Exploratory 1.00 2016-06-14 08:44:48.0 Chiari I Malformation Treatment Outcomes Therapies Treatment/Intervention Data

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C22516 Syrinx length measurement SyrLengthMeasr Measurement of the longitudinal length of the subject's spinal syrinx. Measurement of the longitudinal length of the subject's spinal syrinx. Post-op length Numeric Values

"As per other post-op measures the time post-op must be noted. Syrinx change is optimally noted >3 months post surgery"

Adult;Pediatric Supplemental 1.00 2016-06-13 15:13:46.0 Chiari I Malformation Treatment Outcomes Therapies Treatment/Intervention Data

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0 24 segments
C22576 Parenchymal morphology post surgical procedure tonsil change measurement ParMorPostSurgProcTonChaMeasr Measurement related to the change in the patient's tonsil shape, if any. Measurement related to the change in the patient's tonsil shape, if any. Change in tonsil Improved;No change;Worse Improved;No change;Worse Alphanumeric Adult;Pediatric Supplemental 1.00 2016-06-14 10:11:20.0 Chiari I Malformation Treatment Outcomes Therapies Treatment/Intervention Data

Single Pre-Defined Value Selected

C22533 Surgical procedure complication fluid collection indicator SurgProcCompFluidCollInd Indicator related to the complication of a fluid collection within the brain. Indicator related to the complication of a fluid collection within the brain. Fluid collection No;Yes No;Yes Alphanumeric Adult;Pediatric Supplemental 1.00 2016-06-13 16:19:55.0 Chiari I Malformation Treatment Outcomes Therapies Treatment/Intervention Data

Single Pre-Defined Value Selected

C22555 Symptom weakness pre surgical procedure score SymptmWeakPreSurgProcScore Score related to the symptom scale of the subject's weakness pre-surgery. Score related to the symptom scale of the subject's weakness pre-surgery. Weakness pre score Numeric Values Adult;Pediatric Exploratory 1.00 2016-06-14 08:33:01.0 Chiari I Malformation Treatment Outcomes Therapies Treatment/Intervention Data

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C22392 Imaging pre surgical procedure anatomical site ImgPreSurgProcedAnatSite Anatomical site of the pre-surgical imaging. Anatomical site of the pre-surgical imaging. Anatomical Area Horizontal;Temporal;Coronal;Lateral Horizontal;Temporal;Coronal;Lateral Alphanumeric Adult;Pediatric Supplemental 1.00 2016-06-10 09:27:24.0 Chiari I Malformation Treatment Outcomes Therapies Treatment/Intervention Data

Single Pre-Defined Value Selected

C22566 Symptom depression surgical procedure change score SymptmDepSurgProcChaSco Score related to the change in the subject's depression scores. Score related to the change in the subject's depression scores. Depression change Numeric Values Adult;Pediatric Exploratory 1.00 2016-06-14 08:44:48.0 Chiari I Malformation Treatment Outcomes Therapies Treatment/Intervention Data

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C22517 Syrinx length change measurement SyrLengthChangeMeasr Measurement of the change in the longitudinal length of the patient's spinal syrinx. Measurement of the change in the longitudinal length of the patient's spinal syrinx. Change in length Numeric Values

As above

Adult;Pediatric Supplemental 1.00 2016-06-13 15:16:09.0 Chiari I Malformation Treatment Outcomes Therapies Treatment/Intervention Data

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-24 24 Segments
C22577 Parenchymal morphology post surgical procedure brainstem change measurement ParPostSurgProcBrnstmChaMeasr Measurement of the change in the patient's brainstem shape, if any. Measurement of the change in the patient's brainstem shape, if any. Change in brainstem Improved;No change;Worse Improved;No change;Worse Alphanumeric Adult;Pediatric Supplemental 1.00 2016-06-14 10:11:20.0 Chiari I Malformation Treatment Outcomes Therapies Treatment/Intervention Data

Single Pre-Defined Value Selected

C22534 Surgical procedure complication fluid collection type SurgProcCompFluidCollTyp Type of fluid collection in the patient's brain post operation, if any. Type of fluid collection in the patient's brain post operation, if any. Fluid collection No mass effect;Dural effacement;Neural compression No mass effect;Dural effacement;Neural compression Alphanumeric

Values limited to classifications singly or in combination

Adult;Pediatric Exploratory 1.00 2016-06-13 16:20:55.0 Chiari I Malformation Treatment Outcomes Therapies Treatment/Intervention Data

Multiple Pre-Defined Values Selected

C22556 Symptom weakness post surgical procedure score SymptmWeakPostSurgProcScore Score related to the symptom scale of the subject's weakness post-surgery. Score related to the symptom scale of the subject's weakness post-surgery. Weakness post score Numeric Values Adult;Pediatric Exploratory 1.00 2016-06-14 08:33:01.0 Chiari I Malformation Treatment Outcomes Therapies Treatment/Intervention Data

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C22393 Tonsil left cerebellar measurement TonLtCerebMeasr Measurement related to the lowest position of the patient's left cerebellar tonsil. Measurement related to the lowest position of the patient's left cerebellar tonsil. Position of left cerebellar tonsil Numeric Values

"mm above (-) or below(-) the foramen magnum determined by pre-op landmarks. 0= measurement from low cortical border pre-op"

Adult;Pediatric Supplemental-Highly Recommended 1.00 2016-06-09 16:19:42.0 Chiari I Malformation Treatment Outcomes Therapies Treatment/Intervention Data

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-20 50 millimeters
C22567 Surgical procedure complication transdermal cerebrospinal fluid leak indicator SurgProcCompTraCSFLeakInd Indicator related to the complication of a trans-dermal cerebrospinal fluid (CSF) leak in the patient's brain. Indicator related to the complication of a trans-dermal cerebrospinal fluid (CSF) leak in the patient's brain. Trans-dermal CSF leak No;Yes No;Yes Alphanumeric Adult;Pediatric Supplemental 1.00 2016-06-14 08:47:06.0 Chiari I Malformation Treatment Outcomes Therapies Treatment/Intervention Data

Single Pre-Defined Value Selected

C22518 Syrinx width measurement SyrWidthMeasr Measurement of the maximum width of the patient's spinal syrinx after the operation. Measurement of the maximum width of the patient's spinal syrinx after the operation. Post-op width Numeric Values

Syrinx may be at any level. Two different syrinx's may be listed separately.

Adult;Pediatric Supplemental?Highly Recommended 1.00 2016-06-13 15:18:23.0 Chiari I Malformation Treatment Outcomes Therapies Treatment/Intervention Data

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0 20 Millimeters
C22360 Assessment post surgical procedure date AssmtPostSurgProcedDate Date related to post operative evaluation Date related to post operative evaluation Post-op Evaluation Date Date or Date & Time

All evaluations after the first treatment are considered post-op even if immediately preceding a second procedure. List all visit dates which are at least 3 months after treatment.

Adult;Pediatric Supplemental 1.00 2016-06-09 15:03:09.0 Chiari I Malformation Treatment Outcomes Therapies Treatment/Intervention Data

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C22546 Symptom headache pre surgical procedure score SymptmHeadPreSurgProcScore Score related to the symptom scale of the subject's headache pre-surgery. Score related to the symptom scale of the subject's headache pre-surgery. Headache pre score Numeric Values Adult;Pediatric Exploratory 1.00 2016-06-14 08:23:49.0 Chiari I Malformation Treatment Outcomes Therapies Treatment/Intervention Data

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C22557 Symptom weakness surgical procedure change score SymptmWeakSurgProcChaScore Score related to the change in the subject's weakness scores. Score related to the change in the subject's weakness scores. Weakness change Numeric Values Adult;Pediatric Exploratory 1.00 2016-06-14 08:33:01.0 Chiari I Malformation Treatment Outcomes Therapies Treatment/Intervention Data

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C22394 Tonsil position change measurement TonPosChngMeasr Measurement related to the change in the position of the patient's lowest tonsil between pre surgical and post surgical images. Measurement related to the change in the position of the patient's lowest tonsil between pre surgical and post surgical images. Change in tonsil position (lowest) Numeric Values

Comparison from latest pre op available to #'d post op image with noted post-op time

Adult;Pediatric Supplemental 1.00 2016-06-10 09:38:45.0 Chiari I Malformation Treatment Outcomes Therapies Treatment/Intervention Data

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-20 50 millimeters
C22568 Surgical procedure complication transdermal cerebrospinal fluid leak etiology type SurgProcCompTraCSFLeakEtiTyp Type related to the etiology of the trans-dermal cerebrospinal fluid (CSF) leak, if present. Type related to the etiology of the trans-dermal cerebrospinal fluid (CSF) leak, if present. Trans-dermal CSF leak Related to dehiscence;With infection;With pseudomeningocele Related to dehiscence;With infection;With pseudomeningocele Alphanumeric

312= leak due primarily to meningocele under pressure, accompanied by incision separation and infection

Adult;Pediatric Exploratory 1.00 2016-06-14 08:51:39.0 Chiari I Malformation Treatment Outcomes Therapies Treatment/Intervention Data

Multiple Pre-Defined Values Selected

C22519 Syrinx width change measurement SyrWidthChangeMeasr Measurement of the change in the maximum width of the patient's spinal syrinx after the operation. Measurement of the change in the maximum width of the patient's spinal syrinx after the operation. Change in width Numeric Values

Optimal post op time as listed above, >3 months

Adult;Pediatric Supplemental 1.00 2016-06-13 15:19:43.0 Chiari I Malformation Treatment Outcomes Therapies Treatment/Intervention Data

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-20 20 Millimeters
CSV