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
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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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
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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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
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

C22361 Assessment post surgical procedure type AssmtPostSurgProcedTyp Type of post operative evaluation Type of post operative evaluation Post-op Evaluation Type Phone;Clinic Visit;Physical Exam;Tools Phone;Clinic Visit;Physical Exam;Tools Alphanumeric Adult;Pediatric Supplemental 1.00 2016-06-09 15:08:03.0 Chiari I Malformation Treatment Outcomes Therapies Treatment/Intervention Data

Multiple Pre-Defined Values Selected

C22547 Symptom headache post surgical procedure score SymptmHeadPostSurgProcScore Score related to the symptom scale of the subject's headache post-surgery. Score related to the symptom scale of the subject's headache post-surgery. Headache post 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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C22395 Cerebrospinal fluid dorsal space measurement CSFDorsSpaceMeasr Measurement related to the minimal cerebrospinal fluid (CSF) space dorsal to the tonsils at the craniomandibular joint (CMJ). Measurement related to the minimal cerebrospinal fluid (CSF) space dorsal to the tonsils at the craniomandibular joint (CMJ). Post-op dorsal CSF spaces Numeric Values

Horizontal measurement's minimum from foramen magnum to lowest tonsil tip. Taken post-operative, level of measurement based on pre-op image. Post-op time noted.

Adult;Pediatric Supplemental 1.00 2016-06-10 09:41:33.0 Chiari I Malformation Treatment Outcomes Therapies Treatment/Intervention Data

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0 10 millimeters
C22558 Symptom cranial nerve pre surgical procedure score SymptmCranlNerPreSurgProSco Score related to the symptom scale of the subject's cranial nerves pre surgery. Score related to the symptom scale of the subject's cranial nerves pre surgery. Cranial nerves pre score 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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C22520 Parenchymal morphology post surgical procedure tonsil shape type ParMorPostSurgProcTonsShapeTyp Type of the shape of the patient's cerebellar tonsils post surgery. Type of the shape of the patient's cerebellar tonsils post surgery. Parenchymal morphology - Post op tonsil shape Normal;Compressed;Effaced Normal;Compressed;Effaced Alphanumeric Adult;Pediatric Supplemental 1.00 2016-06-13 15:26:06.0 Chiari I Malformation Treatment Outcomes Therapies Treatment/Intervention Data

Single Pre-Defined Value Selected

C22569 Surgical procedure complication infection indicator SurgProcCompInd Indicator relating to the complication of infection. Indicator relating to the complication of infection. Infection No;Yes No;Yes Alphanumeric Adult;Pediatric Supplemental 1.00 2016-06-14 08:56:25.0 Chiari I Malformation Treatment Outcomes Therapies Treatment/Intervention Data

Single Pre-Defined Value Selected

C22362 Imaging post surgical procedure date ImgPostSurgProcedDate Date of post surgical imaging Date of post surgical imaging Post-op Image Date Date or Date & Time

Image must be of head or spine

Adult;Pediatric Supplemental 1.00 2016-06-09 15:13:28.0 Chiari I Malformation Treatment Outcomes Therapies Treatment/Intervention Data

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C22548 Symptom headache surgical procedure change score SymptmHeadSurgProcChaScore Score related to the change in the subject's headache scores. Score related to the change in the subject's headache scores. Headache change 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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C22396 Cerebrospinal fluid dorsal space change measurement CSFDorsSpaceChngMeasr Measurement related to the change in the width of the dorsal cerebrospinal fluid (CSF) spaces. Measurement related to the change in the width of the dorsal cerebrospinal fluid (CSF) spaces. Change in CSF dorsal space Numeric Values

Horizontal measures of minimum CSF space width are compared quantitatively or qualitatively at the same levels by common landmarks on pre and post op films

Adult;Pediatric Supplemental 1.00 2016-06-10 09:41:33.0 Chiari I Malformation Treatment Outcomes Therapies Treatment/Intervention Data

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-10 10 millimeters
C22559 Symptom cranial nerve post surgical procedure score SymptmCranlNerPostSurgProSco Score related to the symptom scale of the subject's cranial nerves post-surgery. Score related to the symptom scale of the subject's cranial nerves post-surgery. Cranial nerves post score 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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C22521 Assessment pre surgical procedure date AssmtPreSurgProcDate Date of the patient's pre-surgery evaluation. Date of the patient's pre-surgery evaluation. Date of pre-op evaluation Date or Date & Time Adult;Pediatric Supplemental 1.00 2016-06-13 15:40:27.0 Chiari I Malformation Treatment Outcomes Therapies Treatment/Intervention Data

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C22570 Surgical procedure complication infection type SurgProcCompInfTyp Type of infection the subject has, if any. Type of infection the subject has, if any. Infection Ectasia;Pseudomeningocele;soft tissue, subcutaneous Ectasia;Pseudomeningocele;soft tissue, subcutaneous Alphanumeric Adult;Pediatric Exploratory 1.00 2016-06-14 08:59:37.0 Chiari I Malformation Treatment Outcomes Therapies Treatment/Intervention Data

Multiple Pre-Defined Values Selected

C22370 Imaging post surgical procedure type ImgPostSurgProcedTyp Type of post surgical imaging Type of post surgical imaging Post-op Image Type CT;MRI;Plain films CT;MRI;Plain films Alphanumeric

Multiple film types may be listed if taken in one session

Adult;Pediatric Supplemental-Highly Recommended 1.00 2016-06-09 16:02:33.0 Chiari I Malformation Treatment Outcomes Therapies Treatment/Intervention Data

Multiple Pre-Defined Values Selected

C22549 Symptom general pain pre surgical procedure score SymptmGenPainPreSurgProcSco Score related to the symptom scale of the subject's general pain pre-surgery. Score related to the symptom scale of the subject's general pain pre-surgery. General pain pre 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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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
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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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

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

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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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
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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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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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

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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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

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
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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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

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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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

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
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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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

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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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

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

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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CSV