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.

Search Form

CRF Name

447 results.

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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
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
F0920-C10679	C10679	Paid assistance per day hours number	How many hours in a typical 24-hour day do you have someone with you [paid assistance] to provide physical assistance for personal care activities such as eating, bathing, dressing, toileting and mobility?	Supplemental	Social Status	False	Friedreich's Ataxia	Friedreich's Ataxia
F0928-C10521	C10521	Hearing affected by disease indicator	The indicator of whether the disease/disorder has affected the participant's/subject's hearing	Supplemental	Medical History of Friedreich's Ataxia	False	Friedreich's Ataxia	Friedreich's Ataxia
F0921-C10543	C10543	Cancer head or neck radiation treatment indicator	Indicator as to whether the participant's/subject's cancer is or was treated with head or neck radiation	Supplemental	Medical History	False	Friedreich's Ataxia	Friedreich's Ataxia
F2825-C10770	C10770	Echocardiogram left ventricular end diastolic internal dimension z score	Calculated z-score for the left ventricular end - diastolic internal dimension (LVIDd) measured with echocardiography	Supplemental	Echocardiogram	False	Friedreich's Ataxia	Friedreich's Ataxia
F0940-C10720	C10720	Walking other assistive device use indicator	Indicator whether the participant/subject uses any other assistive device for walking	Supplemental	Activities of Daily Living and Gait	False	Friedreich's Ataxia	Friedreich's Ataxia
F0942-C11514	C11514	Bladder Control Scale (BLCS) - almost lost control bladder 4 week scale	The scale related to almost lost control of bladder or had an accident 4 week scale as part of the Bladder Control Scale (BLCS)	Exploratory	Bladder Control Scale (BLCS)	False	Friedreich's Ataxia	Friedreich's Ataxia
F0943-C11522	C11522	Bowel Control Scale (BWCS) - bowel problems restrict lifestyle 4 week scale	Scale measuring how often bowel control problems restricted overall lifestyle in the past 4 week as part of the Bowel Control Scale (BWCS)	Exploratory	Bowel Control Scale (BWCS)	False	Friedreich's Ataxia	Friedreich's Ataxia
F0940-C10696	C10696	Personal hygiene level status	Status that reflects the participant's/subject's current level of personal hygiene	Supplemental-Highly Recommended	Activities of Daily Living and Gait	False	Friedreich's Ataxia	Friedreich's Ataxia
F0940-C10704	C10704	Walking difficulty age others noticed value	Age when other people first noticed the participant's/subject's gait disturbances	Supplemental	Activities of Daily Living and Gait	False	Friedreich's Ataxia	Friedreich's Ataxia
F0940-C10712	C10712	Walking use 2 cane crutch indicator	Indicator whether the participant/subject uses two canes or crutches for walking	Supplemental	Activities of Daily Living and Gait	False	Friedreich's Ataxia	Friedreich's Ataxia
F0935-C10759	C10759	ECG premature ventricular contractions status	Status of absence or presence for an electrocardiographic finding of premature ventricular contractions (PVCs)	Supplemental	Electrocardiogram	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
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
F0920-C10680	C10680	Unpaid assistance per day hours number	How many hours in a typical 24-hour day do you have someone with you [unpaid assistance] to provide physical assistance for personal care activities such as eating, bathing, dressing, toileting and mobility?	Supplemental	Social Status	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
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
F0921-C10546	C10546	Depression first episode diagnosed age value	Value representing the age, in years, at which the participant/subject experienced her or his first depressive episode or was first diagnosed with depression, whichever is earlier	Supplemental	Medical History	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
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
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.