Form Structure: Neuro-QoL Pediatric Cognitive Function Long Form : FITBIR : Federal Interagency Traumatic Brain Injury Research Informatics System

Form Structure: Neuro-QoL Pediatric Cognitive Function Long Form

This form structure is an organized set of data definitions for a copyrighted form

Resource:

FITBIR

Title:

Neuro-QoL Pediatric Cognitive Function Long Form

Short Name:

NeuroQoLPedCogLF

Description:

Disease:

General (For all diseases) Traumatic Brain Injury

Organization:

FITBIR

Required Program Form:

Standardization:

Standard NINDS CDE

Labels:

Form Type:

Clinical Assessment

Version:

1.0

Date Created:

2016-12-23

Owner:

Number of Data Elements:

eForms:

Logically grouped data elements with defined frequency at which they repeat.

#	Title	Short Description	Variable Name	Required?	Type
1	GUID	Global Unique ID which uniquely identifies a subject	GUID	Required	CDE
2	Subject identifier number	An identification number assigned to the participant/subject within a given protocol or a study.	SubjectIDNum	Optional	CDE
3	Age in years	Value for participant's subject age recorded in years.	AgeYrs	Recommended	CDE
4	Vital status	Status of participant/subject as alive or dead	VitStatus	Optional	CDE
5	Visit date	Actual interview or visit date	VisitDate	Recommended	CDE
6	Site name	The name of the site for the study	SiteName	Recommended	CDE
7	Days since baseline	The number of days since baseline	DaysSinceBaseline	Optional	CDE
8	Case control indicator	Indicator of whether subject is in the case or control arm of the study.	CaseContrlInd	Optional	CDE
9	General notes text	General notes	GeneralNotesTxt	Optional	CDE

Additional Element Groups

Listed below are your additional element groups.

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Form Administration (Appears Up To 1 Time)

#	Title	Short Description	Variable Name	Required?	Type
1	Language form administration ISO code	Code (ISO 639-2) for the language that was used for CRF/instrument/scale/etc. administration	LangCRFAdministratISOCode	Recommended	CDE
2	Language form administration ISO code other text	The free-text field related to 'Language used for CRF/instrument/scale/etc. administration ISO code' specifying other text.	LangCRFAdministratISOCodeOTH	Recommended	CDE
3	Context type	The context to which the questions were answered	ContextType	Recommended	CDE
4	Context type other text	The free-text related to ContextType specifying other text	ContextTypeOTH	Recommended	CDE
5	Data source	Source of the data provided on the case report form	DataSource	Recommended	CDE
6	Data source other text	The free-text field related to Data source specifying other text. Source of the data provided on the case report form	DataSourceOTH	Recommended	CDE

NeuroQol Form Administration (Appears Up To 1 Time)

#	Title	Short Description	Variable Name	Required?	Type
1	Quality of Life in Neurological Disorders (Neuro-Qol) - Form administered status	The specific Neuro-Qol form administered status, as part of the Quality of Life in Neurological Disorders (Neuro-Qol).	QoLFormStatus	Recommended	CDE

Pediatric Cognitive Function LF (Appears Up To 1 Time)

#	Title	Short Description	Variable Name	Required?	Type
1	Quality of Life - Forget schoolwork scale	The scale representing how often the participant forgets schoolwork that he or she needs to do, as part of Neuro-QOL Cognitive Function.	QoLForgetSchlwrkScl	Recommended	CDE
2	Quality of Life - Forget word scale	The scale representing how often the participant sometimes forgets what he or she is going to say, as part of Neuro-QOL Cognitive Function.	QoLForgetWordScl	Recommended	CDE
3	Quality of Life - Slower reaction scale	The scale representing how often the participant reacts slower than most people his or her age when he or she plays games, as part of Neuro-QOL Cognitive Function.	QoLSlowerReactionScl	Recommended	CDE
4	Quality of Life - Forget easy scale	The scale representing how often the participant forgets things easily, as part of Neuro-QOL Cognitive Function.	QoLForgetEasyScl	Recommended	CDE
5	Quality of Life - Trouble remembering scale	The scale representing how often the participant has trouble remembering to do things (e.g., school), as part of Neuro-QOL Cognitive Function.	QoLTroubleRememberingScl	Recommended	CDE
6	Quality of Life - Trouble concentrating scale	The scale representing how often the participant finds it hard to concentrate in school, as part of Neuro-QOL Cognitive Function.	QoLTroubleConcentratingScl	Recommended	CDE
7	Quality of Life - Trouble paying attention scale	The scale representing how often the participant has trouble paying attention to the teacher, as part of Neuro-QOL Cognitive Function.	QoLToublePayingAttentionScl	Recommended	CDE
8	Quality of Life - Concentrate extra to avoid mistake scale	The scale representing how often the participant has to work really hard to pay attention or he or she will make a mistake, as part of Neuro-QOL Cognitive Function.	QoLCncntrteExtraAvdMstkeScl	Recommended	CDE
9	Quality of Life - Trouble keeping track work scale	The scale representing how often the participant has a hard time keeping track of his or her homework, as part of Neuro-QOL Cognitive Function.	QoLTroubleKeepingTrackWorkScl	Recommended	CDE
10	Quality of Life - Forget homework material scale	The scale representing how often the participant forgets to bring books or worksheets home that he or she needs for homework, as part of Neuro-QOL Cognitive Function.	QoLForgetHomeworkMaterialScl	Recommended	CDE
11	Quality of Life - Read several times scale	The scale representing how often the participant has to read something several times to understand it, as part of Neuro-QOL Cognitive Function.	QoLReadSeveralTimesScl	Recommended	CDE
12	Quality of Life - Trouble selecting word scale	The scale representing how often the participant finds it hard to find the right words to say what he or she means, as part of Neuro-QOL Cognitive Function.	QoLToubleSelectingWordScl	Recommended	CDE
13	Quality of Life - Longer time schoolwork scale	The scale representing how often the participant takes longer than other people to get his or her schoolwork done, as part of Neuro-QOL Cognitive Function.	QoLLongerTimeSchoolworkScl	Recommended	CDE
14	Quality of Life - List necessary scale	The scale representing how often the participant has to use written lists more often than other people his or her age so that he or she will not forget things, as part of Neuro-QOL Cognitive Function.	QoLListNecessaryScl	Recommended	CDE

NeuroQol Scores (Appears Up To 1 Time)

#	Title	Short Description	Variable Name	Required?	Type
1	Quality of Life in Neurological Disorders (Neuro-Qol) - Items completed count	The count of items on the Neuro-Qol form completed by the participant, as part of the Quality of Life in Neurological Disorders (Neuro-Qol).	QoLItemCompletedCount	Recommended	CDE
2	Quality of Life in Neurological Disorders (Neuro-Qol) - Long Form Raw score	The participant's raw score on the Neuro-Qol form, as part of the Quality of Life in Neurological Disorders (Neuro-Qol).	QoLLFRawScore	Recommended	CDE
3	Quality of Life in Neurological Disorders (Neuro-Qol) - Standard error	Standard error, as part of the Quality of Life in Neurological Disorders (Neuro-Qol)	QoLStandardError	Recommended	CDE
4	Quality of Life in Neurological Disorders (Neuro-Qol) - T-score value	The value of the T-score, a standardized score with a mean of 50 and a standard deviation (SD) of 10 representing the rescaled raw score, as part of the Quality of Life in Neurological Disorders (Neuro-Qol).(PROMIS).	QoLTScore	Recommended	CDE
5	Quality of Life in Neurological Disorders (Neuro-Qol) - Theta value	Theta metric value reported from the CAT Neuro-Qol results, as part of the Quality of Life in Neurological Disorders (Neuro-Qol).	QoLThetaVal	Recommended	CDE

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