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.

Search Form

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.
Select all	CDE ID	CDE Name	Definition	Classification	CRF Name	Copyrighted or trademarked	Disease Name	Subdisease Name
F0925-C17498	C17498	Hand preference before 12 month age indicator	Indicator as to whether the participant/subject had a hand preference before 12 months of age	Exploratory	Pediatric Developmental History	False	Friedreich's Ataxia	Friedreich's Ataxia
F0943-C11521	C11521	Bowel Control Scale (BWCS) - bowel control problems altered activities 4 week scale	Scale assessing how often the participant/subject altered activities because of bowel control problems in the past 4 weeks as part of the Bowel Control Scale (BWCS)	Exploratory	Bowel Control Scale (BWCS)	False	Friedreich's Ataxia	Friedreich's Ataxia
F0927-C08147	C08147	Data source	Source of the data provided on the case report form	Exploratory	History Data Source and Reliability	False	Friedreich's Ataxia	Friedreich's Ataxia
F0923-C11083	C11083	Delivery extraction type	Type of extraction used to assist with the delivery of the participant/subject	Exploratory	Prenatal and Perinatal History	False	Friedreich's Ataxia	Friedreich's Ataxia
F0923-C11067	C11067	Pregnancy or delivery risk factor indicator	Whether the specific risk factor to the participant's/subject's health was experienced during the prenatal period (i.e., during time mother pregnant), at the time of delivery, or soon after delivery	Exploratory	Prenatal and Perinatal History	False	Friedreich's Ataxia	Friedreich's Ataxia
F0919-C10677	C10677	ZIP partial code	First three digits of the zip code where the participant/subject currently lives	Exploratory	Demographics	False	Friedreich's Ataxia	Friedreich's Ataxia
F0925-C05130	C05130	Therapy or rehabilitation type	Type of therapy or rehabilitation services received by the participant/subject	Exploratory	Pediatric Developmental History	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
F0925-C17499	C17499	Special education indicator	Indicator as to whether the participant/subject has or had special education	Exploratory	Pediatric Developmental History	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
F0927-C11133	C11133	History data not obtained reason	Reason(s) the medical/family history data were not obtained from the participant/subject and instead were obtained from alternate source(s)	Exploratory	History Data Source and Reliability	False	Friedreich's Ataxia	Friedreich's Ataxia
F0923-C17490	C17490	Birth delivery history indicator	Indicator of pregnancy/delivery risk factors	Exploratory	Prenatal and Perinatal History	False	Friedreich's Ataxia	Friedreich's Ataxia
F2746-C17828	C17828	Modified Fatigue Impact Scale-5-Item Version (MFIS-5) - trouble maintaining long physical effort scale	Scale for having had trouble maintaining physical effort for long periods as part of Modified Fatigue Impact Scale 5-Item Version (MFIS-5) form	Supplemental	Modified Fatigue Impact Scale (MFIS)	False	Friedreich's Ataxia	Friedreich's Ataxia
F0934-C58699	C58699	Cardiac magnetic resonance left ventricular stroke volume integer	Integer for the value in milliliters of the stroke volume of the left ventricle (LVSV) as determined through cardiac magnetic resonance	Supplemental	Cardiac Magnetic Resonance Imaging	False	Friedreich's Ataxia	Friedreich's Ataxia
F1027-C17864	C17864	Timed 25-Foot Walk (T25FW) - trial number	Number assigned for identification to the trial currently being assessed, as part of the Frontal Behavioral Inventory-ALS Version (FBI-ALS)	Supplemental	Timed 25-Foot Walk (T25-FW)	False	Friedreich's Ataxia	Friedreich's Ataxia
F0921-C17483	C17483	Psychiatric history clinical anxiety diagnosis indicator	Indicator as to whether the participant/subject has had an anxiety diagnosis	Supplemental	Medical History	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
F2825-C10731	C10731	Echocardiogram right atrial enlargement status	Status of right atrial enlargement on the echocardiogram	Supplemental	Echocardiogram	False	Friedreich's Ataxia	Friedreich's Ataxia
F0934-C58707	C58707	Cardiac magnetic resonance right ventricular ejection fraction integer	Integer representing the patient's right ventricular ejection fraction using the right ventricular stroke volume as a percentage of the right ventricular end diastolic volume	Supplemental	Cardiac Magnetic Resonance Imaging	False	Friedreich's Ataxia	Friedreich's Ataxia
F0921-C19057	C19057	Diabetes mellitus complications other text	The free-text field related to 'Diabetes mellitus complications type' specifying other text. Type(s) of complications related to diabetes mellitus the participant/subject has experienced or is experiencing	Supplemental	Medical History	False	Friedreich's Ataxia	Friedreich's Ataxia
F0931-C01703	C01703	Lab panel category	Category or panel of lab tests, often logically grouped according to type of testing (Hematology, Chemistry, Urinalysis) or specimen type (Blood, Urine, CSF)	Supplemental	Laboratory Tests	False	Friedreich's Ataxia	Friedreich's Ataxia
F0921-C00316	C00316	Medical history condition end date and time	Date (and time, if applicable and known) for the end of an event in the participant's medical history	Supplemental	Medical History	False	Friedreich's Ataxia	Friedreich's Ataxia
F2825-C10741	C10741	Echocardiogram aortic valve regurgitation degree status	Status of the degree of regurgitation (leaking of the valve that allows blood to flow in the reverse direction) in the aortic valve as assessed by echocardiography	Supplemental	Echocardiogram	False	Friedreich's Ataxia	Friedreich's Ataxia
F0935-C04506	C04506	ECG right ventricular hypertrophy status	Status of right ventricular hypertrophy on the electrocardiogram (ECG/EKG) being reported	Supplemental	Electrocardiogram	False	Friedreich's Ataxia	Friedreich's Ataxia
F2746-C11914	C11914	Modified Fatigue Impact Scale (MFIS) - pace physical activity score	Scale for having paced self in the physical activities as part of Modified Fatigue Impact Scale form	Supplemental	Modified Fatigue Impact Scale (MFIS)	False	Friedreich's Ataxia	Friedreich's Ataxia

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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.