CDE Catalog | NINDS Common Data Elements

***Please contact the NINDS CDE Team (NINDSCDE@emmes.com) if 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 22 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.
Select all	CDE ID	CDE Name	Definition	Classification	CRF Name	Copyrighted or trademarked	Disease Name	Subdisease Name
F0940-C10706	C10706	Walking difficulty age support first needed value	Age of participant/subject when intermittent support first needed for walking	Supplemental	Activities of Daily Living and Gait	False	Friedreich's Ataxia	Friedreich's Ataxia
F0940-C10714	C10714	Walker use indicator	Indicator whether the participant/subject uses a walker	Supplemental	Activities of Daily Living and Gait	False	Friedreich's Ataxia	Friedreich's Ataxia
F0940-C10722	C10722	Walking primary assistive device daily use duration	Duration for which the participant/subject uses her or his primary assistive walking device on a daily basis	Supplemental	Activities of Daily Living and Gait	False	Friedreich's Ataxia	Friedreich's Ataxia
F0928-C10504	C10504	Impaired physical ability during infancy indicator	Whether the participant/subject has a history of impaired physical abilities during infancy	Supplemental	Medical History of Friedreich's Ataxia	False	Friedreich's Ataxia	Friedreich's Ataxia
F0942-C11516	C11516	Bladder Control Scale (BLCS) - restricted lifestyle 4 week severity	The scale related to restricted overall lifestyle because of bladder problems as part of the Bladder Control Scale (BLCS)	Exploratory	Bladder Control Scale (BLCS)	False	Friedreich's Ataxia	Friedreich's Ataxia
F0928-C10512	C10512	Friedreich's ataxia length of GAA repeat allele 1 measurement	The length of the GAA trinucleotide repeat on allele 1 found through genetic testing	Core	Medical History of Friedreich's Ataxia	False	Friedreich's Ataxia	Friedreich's Ataxia
F0934-C10605	C10605	Cardiac MRI hyper - enhancement by LGE indicator	Whether myocardial hyper-enhancement was found by late gadolinium enhancement (LGE) by the cardiac Magnetic Resonance Imaging	Supplemental	Cardiac Magnetic Resonance Imaging	False	Friedreich's Ataxia	Friedreich's Ataxia
F0920-C10681	C10681	In-home assistance for remembering, decision making, or judgment duration	Amount of time per day the subject/participant requires the help of an assistant for decision making/remembering	Supplemental	Social Status	False	Friedreich's Ataxia	Friedreich's Ataxia
F2850-C10878	C10878	Holter exam arrhythmias identified indicator	The indicator of whether any arrhythmias were identified during the Holter examination	Supplemental	Holter Exam	False	Friedreich's Ataxia	Friedreich's Ataxia
F0928-C10522	C10522	Speech affected by disease indicator	The indicator of whether the disease/disorder has affected the participant's/subject's speech	Core	Medical History of Friedreich's Ataxia	False	Friedreich's Ataxia	Friedreich's Ataxia
F0940-C10699	C10699	Sitting ability status	Status that reflects the participant's/subject's current ability to sit	Supplemental-Highly Recommended	Activities of Daily Living and Gait	False	Friedreich's Ataxia	Friedreich's Ataxia
F0928-C18804	C18804	Delayed motor milestones specify text	The free-text field related to 'Delayed motor milestones indicator'. Whether the participant/subject has a history of delayed motor milestones. If participant had delayed motor milestones, indicate type of delayed motor milestones	Supplemental	Medical History of Friedreich's Ataxia	False	Friedreich's Ataxia	Friedreich's Ataxia
F0940-C10707	C10707	Walking difficulty age permanent support started value	Age of participant/subject when permanent support first needed walking	Supplemental	Activities of Daily Living and Gait	False	Friedreich's Ataxia	Friedreich's Ataxia
F2825-C10776	C10776	Echocardiogram left ventricle mass z-score value	Calculated z-score for the left ventricle mass (index) measured with echocardiography	Supplemental	Echocardiogram	False	Friedreich's Ataxia	Friedreich's Ataxia
F0940-C10715	C10715	Walker use age started value	Age of the participant/subject when he/she began using a walker	Supplemental	Activities of Daily Living and Gait	False	Friedreich's Ataxia	Friedreich's Ataxia
F0928-C10505	C10505	Delayed motor milestones indicator	Whether the participant/subject has a history of delayed motor milestones. If participant had delayed motor milestones, indicate type of delayed motor milestones	Supplemental	Medical History of Friedreich's Ataxia	False	Friedreich's Ataxia	Friedreich's Ataxia
F0942-C11517	C11517	Bladder Control Scale (BLCS) - scores sum value	Sum of scores from questions 1 through 4 (0-22) as part of the Bladder Control Scale (BLCS)	Exploratory	Bladder Control Scale (BLCS)	False	Friedreich's Ataxia	Friedreich's Ataxia
F0928-C10513	C10513	Friedreich's ataxia length of GAA repeat allele 2 measurement	Length of the GAA repeat on allele 2 found through genetic testing	Core	Medical History of Friedreich's Ataxia	False	Friedreich's Ataxia	Friedreich's Ataxia
F0925-C18821	C18821	School placement other text	The free-text field related to 'School placement type' specifying other text. The description of the type of education the participant/subject receives with details of being with or without assistance	Exploratory	Pediatric Developmental History	False	Friedreich's Ataxia	Friedreich's Ataxia
F0940-C10719	C10719	Wheelchair use age started value	Age of the participant/subject when he/she began using a wheelchair	Supplemental	Activities of Daily Living and Gait	False	Friedreich's Ataxia	Friedreich's Ataxia
F0940-C10713	C10713	Walking cane or crutches pair use age started value	Age of the participant/subject when he/she began using two canes or crutches for walking	Supplemental	Activities of Daily Living and Gait	False	Friedreich's Ataxia	Friedreich's Ataxia
F0923-C11063	C11063	Parity maternal value	Number of live born children the participant's/subject's mother has delivered	Exploratory	Prenatal and Perinatal History	False	Friedreich's Ataxia	Friedreich's Ataxia

447 results.

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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.