CDE Catalog

***Please contact NINDS CDE team (NINDSCDE@emmes.com) in case you encounter any search difficulties.***

The CDE Catalog is a directory of the available NINDS CDEs. Users can search the Catalog to isolate a subset of the CDEs (e.g., all stroke-specific CDEs, etc.), and to view and download details about the CDEs.

Select any filter below to search the CDE Catalog.

For best results, clear form between searches. In addition, when specifying NeuroRehab, Sport Related Concussion or Traumatic Brain Injury as the Disease, please select a Sub-Disease as well.

NeuroRehab Comprehensive includes all CDE recommendations.

NeuroRehab General includes all CDE recommendations that are not disease specific.

All other NeuroRehab Sub-Diseases include recommendations specific to existing NINDS CDE project disorders.

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The search results below can be downloaded by clicking the checkboxes on the far left side of the table. Select the header checkbox to select all CDEs listed on the first page. Then choose CDE Detailed Report from the Choose an operation dropdown menu.
CDE ID CDE Name Definition Classification CRF Name Copyrighted or trademarked Disease Name Sub Disease Name
C00030 Race USA category

The patient's self declared racial origination, independent of ethnic origination, using OMB approved categories.

Core General Core Facioscapulohumeral Muscular Dystrophy Facioscapulohumeral Muscular Dystrophy
C00030 Race USA category

The patient's self declared racial origination, independent of ethnic origination, using OMB approved categories.

Core Demographics Facioscapulohumeral Muscular Dystrophy Facioscapulohumeral Muscular Dystrophy
C00313 Medical history condition SNOMED CT code

Systematized Nomenclature Of Medicine Clinical Terms (SNOMED CT) code for medical condition/disease reported by the participant/subject

Core General Core Facioscapulohumeral Muscular Dystrophy Facioscapulohumeral Muscular Dystrophy
C00313 Medical history condition SNOMED CT code

Systematized Nomenclature Of Medicine Clinical Terms (SNOMED CT) code for medical condition/disease reported by the participant/subject

Core Medical History Facioscapulohumeral Muscular Dystrophy Facioscapulohumeral Muscular Dystrophy
C00322 Medical history condition text

Verbatim text for the medical condition/disease reported by the participant/subject or documented in the medical record as part of medical history

Core General Core Facioscapulohumeral Muscular Dystrophy Facioscapulohumeral Muscular Dystrophy
C58676 Birth sex assigned type

Self-reported phenotypic sex of participant/subject, assigned at birth.

Core General Core Facioscapulohumeral Muscular Dystrophy Facioscapulohumeral Muscular Dystrophy
C00035 Gender type

Self-reported gender of the participant/subject.

Core Demographics Facioscapulohumeral Muscular Dystrophy Facioscapulohumeral Muscular Dystrophy
C00007 Birth date

Date (and time, if applicable and known) the participant/subject was born

Core Demographics Facioscapulohumeral Muscular Dystrophy Facioscapulohumeral Muscular Dystrophy
C00020 Ethnicity USA category

Category of ethnicity the participant/subject most closely identifies with

Core Demographics Facioscapulohumeral Muscular Dystrophy Facioscapulohumeral Muscular Dystrophy
C00007 Birth date

Date (and time, if applicable and known) the participant/subject was born

Core General Core Facioscapulohumeral Muscular Dystrophy Facioscapulohumeral Muscular Dystrophy
C58677 Gender identity type

Gender identity self-identified by the subject/participant. Gender type may or may not match sex assigned at birth.

Core General Core Facioscapulohumeral Muscular Dystrophy Facioscapulohumeral Muscular Dystrophy
C00322 Medical history condition text

Verbatim text for the medical condition/disease reported by the participant/subject or documented in the medical record as part of medical history

Core Medical History Facioscapulohumeral Muscular Dystrophy Facioscapulohumeral Muscular Dystrophy
C00020 Ethnicity USA category

Category of ethnicity the participant/subject most closely identifies with

Core General Core Facioscapulohumeral Muscular Dystrophy Facioscapulohumeral Muscular Dystrophy
C11080 Delivery modality type

Type of modality of the participant/subject's intrauterine orientation at delivery

Supplemental Pregnancy Facioscapulohumeral Muscular Dystrophy Facioscapulohumeral Muscular Dystrophy
C17790 Dynamometry hand held time

Time the hand held dynamometry was performed.

Supplemental Hand Held Dynamometry Facioscapulohumeral Muscular Dystrophy Facioscapulohumeral Muscular Dystrophy
C12819 Disability benefit indicator

Indicator of whether participant/subject receives disability benefit payments

Supplemental Social Status Facioscapulohumeral Muscular Dystrophy Facioscapulohumeral Muscular Dystrophy
C12382 Respiratory tracheostomy tube brand style name

Name of the brand/style of the invasive tracheostomy device used by the participant/subject

Supplemental Respiratory Interventions Facioscapulohumeral Muscular Dystrophy Facioscapulohumeral Muscular Dystrophy
C08515 36-item Short Form Health Survey (SF-36) - Limited work activities physical health indicator

Indicator for surveyee-reported limited work or activities as a result of physical health during past 4 weeks as part of version 1.0 of 36-item Short Form Health Survey (SF-36)

Supplemental Short Form 36-Item Health Survey (SF-36) Facioscapulohumeral Muscular Dystrophy Facioscapulohumeral Muscular Dystrophy
C19647 Imaging short T1 inversion recovery lower limbs anatomic site

Lower limbs anatomic site of short tau inversion recovery (STIR) sequence

Supplemental Magnetic Resonance Imaging (MRI) Facioscapulohumeral Muscular Dystrophy Facioscapulohumeral Muscular Dystrophy
C01707 Lab test abnormality significance type

Indicator as to whether or not the abnormal lab result for the associated test was considered clinically significant for the participant/subject.

Supplemental Laboratory Tests and Tracking Facioscapulohumeral Muscular Dystrophy Facioscapulohumeral Muscular Dystrophy
C14943 Family history relative deceased indicator

Indicator of whether family member is deceased

Supplemental Family History Facioscapulohumeral Muscular Dystrophy Facioscapulohumeral Muscular Dystrophy
C12390 Respiratory ventilation mode synchronized intermittent mandatory ventilation pressure support type

Type of synchronized intermittent mandatory ventilation (SIMV) with pressure support ventilation used

Supplemental Respiratory Interventions Facioscapulohumeral Muscular Dystrophy Facioscapulohumeral Muscular Dystrophy
C08523 36-item Short Form Health Survey (SF-36) - Times pep score

Score of times feeling full of pep during the past 4 weeks as part of version 1.0 of 36-item Short Form Health Survey (SF-36)

Supplemental Short Form 36-Item Health Survey (SF-36) Facioscapulohumeral Muscular Dystrophy Facioscapulohumeral Muscular Dystrophy
C19733 Imaging T1 MRI upper limb score

The value of the sum of the T1 score for each upper-limb muscle, bilaterally.

Supplemental Magnetic Resonance Imaging (MRI) Facioscapulohumeral Muscular Dystrophy Facioscapulohumeral Muscular Dystrophy
C12409 Pulmonary gas exchange measurement type

The type of gas exchange measurement used on participant/subject

Supplemental Measures of Gas Exchange Facioscapulohumeral Muscular Dystrophy Facioscapulohumeral Muscular Dystrophy
Displaying 1 - 25 of 500

The NINDS CDE Team does not post proprietary instruments/scales recommended by the CDE Working Groups on this website. This includes, but is not limited to, copyrighted or trademarked instruments/scales. Information about recommended instruments can be found in the Notice of Copyright (NOC) documents under ‘CRF Module/Guideline’ on each disorder’s data standards page. For any questions regarding these instruments/scales please contact the corresponding owner/author. The NINDS CDE Team is not responsible for the availability or content of these external sites, nor does the NINDS CDE Team endorse, warrant or guarantee the products, services or information described or offered at these other internet sites.