CDE Catalog | NINDS Common Data Elements

***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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CRF Name

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Operations

Selected 25 rows in this page.

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
C19670	Family history diagnosis age indicator	Indicator for whether the participant/subject knows the age of the relative when diagnosed	Supplemental	Family History	False	Myotonic Muscular Dystrophy	Myotonic Muscular Dystrophy
C19521	Thyroid condition type	Type of thyroid condition	Supplemental	Medical History	False	Myotonic Muscular Dystrophy	Myotonic Muscular Dystrophy
C19706	Non-Dystrophic Myotonia Interactive Voice Response (IVR) Diary - Pain prior day assessment indicator	Indicator of pain felt within the last 24 hours	Exploratory	Non-Dystrophic Myotonia Interactive Voice Response (IVR) Diary	False	Myotonic Muscular Dystrophy	Myotonic Muscular Dystrophy
C21939	Pediatric Quality of Life Inventory (PedsQL) - Problem low energy difficulty scale	Scale of problems with low energy, as part of the Pediatric Quality of Life Inventory (PedsQL).	Supplemental	Pediatric Quality of Life Inventory (PEDSQL)	True	Myotonic Muscular Dystrophy	Myotonic Muscular Dystrophy
C19757	Gene mutation myotonic dystrophy other variant indicator	The indicator related to whether there were any additional variants/mutations in the specified genes	Supplemental	Mutation Analysis	False	Myotonic Muscular Dystrophy	Myotonic Muscular Dystrophy
C18689	Imaging anatomic site other text	The free-text field related to 'Imaging anatomic site' specifying other text. Type of body part or anatomy scanned in the imaging study	Supplemental	Magnetic Resonance Imaging (MRI)	False	Myotonic Muscular Dystrophy	Myotonic Muscular Dystrophy
C21950	Pediatric Quality of Life Inventory (PedsQL) - Problem school absent unwell difficulty scale	Scale of problems with missing school because of not feeling well, as part of the Pediatric Quality of Life Inventory (PedsQL).	Supplemental	Pediatric Quality of Life Inventory (PEDSQL)	True	Myotonic Muscular Dystrophy	Myotonic Muscular Dystrophy
C21960	Pediatric Quality of Life Inventory (PedsQL) - Problem sport activity exercise participation difficulty scale	Scale of problems with participating in sports activity or exercise, as part of the Pediatric Quality of Life Inventory (PedsQL).	Supplemental	Pediatric Quality of Life Inventory (PEDSQL)	True	Myotonic Muscular Dystrophy	Myotonic Muscular Dystrophy
C19671	Family history current decease age value	Value of current age or age at death for relative with the disease in question	Supplemental	Family History	False	Myotonic Muscular Dystrophy	Myotonic Muscular Dystrophy
C19522	Muscle disease hereditary type specify text	Specify text for type of hereditary muscle disease	Supplemental	Medical History	False	Myotonic Muscular Dystrophy	Myotonic Muscular Dystrophy
C19707	Non-Dystrophic Myotonia Interactive Voice Response (IVR) Diary - Pain prior day assessment scale	Scale of amount of pain within the last 24 hours	Exploratory	Non-Dystrophic Myotonia Interactive Voice Response (IVR) Diary	False	Myotonic Muscular Dystrophy	Myotonic Muscular Dystrophy
C19750	Gene mutation myotonic dystrophy detected type	Type mutations detected	Supplemental	Mutation Analysis	False	Myotonic Muscular Dystrophy	Myotonic Muscular Dystrophy
C21940	Pediatric Quality of Life Inventory (PedsQL) - Problem memory difficulty scale	Scale of problems forgetting things, as part of the Pediatric Quality of Life Inventory (PedsQL).	Supplemental	Pediatric Quality of Life Inventory (PEDSQL)	True	Myotonic Muscular Dystrophy	Myotonic Muscular Dystrophy
C19758	Target RNA alternative splicing indicator	The indicator of whether there were target RNA species for alternative splicing investigated	Supplemental	Mutation Analysis	False	Myotonic Muscular Dystrophy	Myotonic Muscular Dystrophy
C18696	Imaging dimension other text	The free-text field related to 'Imaging dimension type' specifying other text. Type of imaging dimension used	Supplemental	Magnetic Resonance Imaging (MRI)	False	Myotonic Muscular Dystrophy	Myotonic Muscular Dystrophy
C21951	Pediatric Quality of Life Inventory (PedsQL) - Problem unable social activity skill peer difficulty scale	Scale of problems with not being able to do things that other teens/kids their age can do, as part of the Pediatric Quality of Life Inventory (PedsQL).	Supplemental	Pediatric Quality of Life Inventory (PEDSQL)	True	Myotonic Muscular Dystrophy	Myotonic Muscular Dystrophy
C21961	Pediatric Quality of Life Inventory (PedsQL) - Problem peer teasing difficulty scale	Scale of problems with getting teased by other teen/kids, as part of the Pediatric Quality of Life Inventory (PedsQL).	Supplemental	Pediatric Quality of Life Inventory (PEDSQL)	True	Myotonic Muscular Dystrophy	Myotonic Muscular Dystrophy
C19672	Family history death cause text	Text describing the cause of death for relative with the disease in question	Supplemental	Family History	False	Myotonic Muscular Dystrophy	Myotonic Muscular Dystrophy
C18751	Sex participant or subject genotype other text	The free-text field related to 'Sex participant or subject genotype type' specifying other text. The difference between male and female, based upon the interactions between genes and between the genotype and the environment. Genotype is identified based on the individual's reproductive organs and functions assigned by chromosomal complement.	Supplemental	Demographics	False	Myotonic Muscular Dystrophy	Myotonic Muscular Dystrophy
C19523	Muscle disease inflammatory type specify text	Specify text for type of inflammatory muscle disease	Supplemental	Medical History	False	Myotonic Muscular Dystrophy	Myotonic Muscular Dystrophy
C19708	Non-Dystrophic Myotonia Interactive Voice Response (IVR) Diary - Weakness prior day assessment indicator	Indicator of weakness felt within the last 24 hours	Exploratory	Non-Dystrophic Myotonia Interactive Voice Response (IVR) Diary	False	Myotonic Muscular Dystrophy	Myotonic Muscular Dystrophy
C19736	Respiration intervention invasive tracheostomy tube indicator	Indicator of invasive respiratory support including a tracheostomy tube	Supplemental	Respiratory Interventions	False	Myotonic Muscular Dystrophy	Myotonic Muscular Dystrophy
C21930	Pediatric Quality of Life Inventory (PedsQL) - Problem hurt ache scale	Scale of problems with having hurts or aches, as part of the Pediatric Quality of Life Inventory (PedsQL).	Supplemental	Pediatric Quality of Life Inventory (PEDSQL)	True	Myotonic Muscular Dystrophy	Myotonic Muscular Dystrophy
C19751	Gene mutation myotonic dystrophy repeat length assessment indicator	Indicator of whether the mutated repeated allele's length was analyzed	Supplemental	Mutation Analysis	False	Myotonic Muscular Dystrophy	Myotonic Muscular Dystrophy
C21942	Pediatric Quality of Life Inventory (PedsQL) - Problem gain friend difficulty scale	Scale of problems with other kids not wanting to be their friend, as part of the Pediatric Quality of Life Inventory (PedsQL).	Supplemental	Pediatric Quality of Life Inventory (PEDSQL)	True	Myotonic Muscular Dystrophy	Myotonic Muscular Dystrophy

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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.