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 (SRC) or Traumatic Brain Injury (TBI) as the Disease, please select a Subdisease as well.

NeuroRehab Comprehensive includes all NeuroRehab CDE recommendations. NeuroRehab General includes all NeuroRehab CDE recommendations that are not disease specific. All other NeuroRehab Subdiseases include recommendations specific to existing NINDS CDE project disorders.

Choose your Time Frame for your SRC study (Acute (time of injury until 72 hours), Subacute (after 72 hours to 3 months), and Persistent/Chronic (3 months and greater post-concussion) or Comprehensive if your study falls across the study time frames.

Choose your type of TBI study (Acute Hospitalized, Concussion/Mild TBI, Moderate/Severe TBI: Rehabilitation, or Epidemiology) or Comprehensive if your study falls outside of the study types or incorporates aspects of more than one type of study.

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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	Subdisease Name
C06002	Inpatient treatment total day number	Total number of days spent in the hospital from the date of injury until discharge from the last inpatient treatment phase (the date of inpatient discharge)	Supplemental-Highly Recommended	International SCI Core Data Set	False	Spinal Cord Injury	Spinal Cord Injury
C19496	Spinal cord injury upper extremity hand reconstructive surgery performed anatomic site	The anatomic site related to upper extremity or hand reconstructive surgery being performed due to spinal cord injury	Supplemental-Highly Recommended	International SCI Upper Extremity Basic Data Set	False	Spinal Cord Injury	Spinal Cord Injury
C02411	Laterality type	Laterality type relative to the anatomic site of the body examined or affected	Supplemental-Highly Recommended	International SCI Upper Extremity Basic Data Set	False	Spinal Cord Injury	Spinal Cord Injury
C06000	Site identifier number	Unique identification number given to the study site to distinguish the location where data is recorded	Supplemental-Highly Recommended	International SCI Pain Basic Data Set Version 2.0	False	Spinal Cord Injury	Spinal Cord Injury
C19495	Spinal cord injury upper extremity hand reconstructive surgery status	Indicate whether upper extremity/hand reconstructive surgery was performed	Supplemental-Highly Recommended	International SCI Upper Extremity Basic Data Set	False	Spinal Cord Injury	Spinal Cord Injury
C06062	Pain intensity average past week scale	Scale of the participant's/subject's pain intensity in the past week. A 0 - 10 Numerical Rating Scale (ranging from 0 = "No pain" to a maximum of 10 = "Pain as bad as you can imagine") of average pain intensity for the past week	Supplemental-Highly Recommended	International SCI Pain Basic Data Set Version 2.0	False	Spinal Cord Injury	Spinal Cord Injury
C06000	Site identifier number	Unique identification number given to the study site to distinguish the location where data is recorded	Supplemental-Highly Recommended	International SCI Upper Extremity Basic Data Set	False	Spinal Cord Injury	Spinal Cord Injury
C15985	Multiple birth indicator	Indicates whether the participant/subject was a part of a multiple live birth	Supplemental-Highly Recommended	Birth Injuries	False	Spinal Cord Injury	Spinal Cord Injury
C14699	Berg Balance Scale (BBS) - unsupport feet together scale	The scale for assessment of standing unsupported with feet together based on the Berg Balance Scale (or BBS), a clinical test of a person's static and dynamic balance abilities	Supplemental-Highly Recommended	Berg Balance Scale (BBS)	False	Spinal Cord Injury	Spinal Cord Injury
C17394	Berg Balance Scale (BBS) - stand one leg scale	The scale for assessment of standing on one leg based on the Berg Balance Scale (or BBS), a clinical test of a person's static and dynamic balance abilities	Supplemental-Highly Recommended	Berg Balance Scale (BBS)	False	Spinal Cord Injury	Spinal Cord Injury
C07438	Patient Health Questionnaire (PHQ) - Movement speech impairment score	Score of how much the subject has been suffering with moving or speaking too slowly in the past two weeks, as part of the Patient Health Questionnaire (PHQ)	Supplemental-Highly Recommended	Patient Health Questionnaire - 9 (PHQ-9) Depression Scale	True	Spinal Cord Injury	Spinal Cord Injury
C00013	Education level primary caregiver USA type	Highest grade or level of school the participant's/subject's primary caregiver has completed or the highest degree he/she has received	Supplemental-Highly Recommended	Demographics	False	Spinal Cord Injury	Spinal Cord Injury
C11079	Neonate delivery route type	Route of delivery of the neonate	Supplemental-Highly Recommended	Birth Injuries	False	Spinal Cord Injury	Spinal Cord Injury
C06003	Injury associate spinal cord injury indicator	Whether any of the following pre-specified major injuries occurred at the same time as the spinal cord injury: moderate to severe traumatic brain injury (Glasgow Coma Scale 12 or below at discharge), non-vertebral fractures requiring surgery, severe facial injuries affecting sense organs, major chest injury requiring chest-tube or mechanical ventilation, traumatic amputations of an arm or leg (or injuries severe enough to require surgical amputation), severe hemorrhaging, or damage to any internal organ requiring surgery	Supplemental-Highly Recommended	International SCI Core Data Set	False	Spinal Cord Injury	Spinal Cord Injury
C19497	Spinal cord injury upper extremity hand reconstructive surgery performed indicator	The indicator of whether upper extremity or hand reconstructive surgery was performed due to spinal cord injury	Supplemental-Highly Recommended	International SCI Upper Extremity Basic Data Set	False	Spinal Cord Injury	Spinal Cord Injury
C06000	Site identifier number	Unique identification number given to the study site to distinguish the location where data is recorded	Supplemental-Highly Recommended	International SCI Upper Extremity Basic Data Set	False	Spinal Cord Injury	Spinal Cord Injury
C06005	Data collected date and time	Date (and time, if applicable and known) the data were collected. This may be the date/time a particular examination or procedure was performed	Supplemental-Highly Recommended	International SCI Pain Basic Data Set Version 2.0	False	Spinal Cord Injury	Spinal Cord Injury
C19496	Spinal cord injury upper extremity hand reconstructive surgery performed anatomic site	The anatomic site related to upper extremity or hand reconstructive surgery being performed due to spinal cord injury	Supplemental-Highly Recommended	International SCI Upper Extremity Basic Data Set	False	Spinal Cord Injury	Spinal Cord Injury
C06063	Pain onset date	Date (and time, if applicable and known) the particular pain problem started	Supplemental-Highly Recommended	International SCI Pain Basic Data Set Version 2.0	False	Spinal Cord Injury	Spinal Cord Injury
C19096	Surgery performed date	Date of last surgical intervention	Supplemental-Highly Recommended	International SCI Upper Extremity Basic Data Set	False	Spinal Cord Injury	Spinal Cord Injury
C17983	Caesarean delivery timing type	Type of timing conditions under which Caesarean delivery was decided upon	Supplemental-Highly Recommended	Birth Injuries	False	Spinal Cord Injury	Spinal Cord Injury
C14700	Berg Balance Scale (BBS) - reach forward scale	The scale for assessment of reaching forward with outstretched arm while standing based on the Berg Balance Scale (or BBS), a clinical test of a person's static and dynamic balance abilities	Supplemental-Highly Recommended	Berg Balance Scale (BBS)	False	Spinal Cord Injury	Spinal Cord Injury
C07430	Patient Health Questionnaire (PHQ) - Little interest score	Score of how much the subject has been bothered by having little interest or pleasure in doing things in the past two weeks, as part of the Patient Health Questionnaire (PHQ)	Supplemental-Highly Recommended	Patient Health Questionnaire - 9 (PHQ-9) Depression Scale	True	Spinal Cord Injury	Spinal Cord Injury
C07439	Patient Health Questionnaire (PHQ) - Better dead thought score	Score of how much the subject has been suffering with the thoughts of that he/she would be better off dead to hurt, as part of the Patient Health Questionnaire (PHQ)	Supplemental-Highly Recommended	Patient Health Questionnaire - 9 (PHQ-9) Depression Scale	True	Spinal Cord Injury	Spinal Cord Injury
C00015	Education year count	Number of years of education completed (age 5 and beyond)	Supplemental-Highly Recommended	Demographics	False	Spinal Cord Injury	Spinal Cord Injury

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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.