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

Form Structure: Neuro-QoL Pediatric Stigma Long Form

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

Title:

Neuro-QoL Pediatric Stigma Long Form

Short Name:

NeuroQoLPedStigmaLF

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:

2016-12-29

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 Stigma LF (Appears Up To 1 Time)

#	Title	Short Description	Variable Name	Required?	Type
1	Quality of Life - Stigma illness other peer avoid recent assessment scale	The scale representing how often the participant found that others avoided him or her lately, as part of Neuro-QOL Stigma.	QoLStgmIllnssOthPeerAvdRcntScl	Recommended	CDE
2	Quality of Life - Stigma illness feel left out recent assessment scale	The scale representing how often the participant felt left out of things lately, as part of Neuro-QOL Stigma.	QoLStgmIllnssFeelLftOthRcntScl	Recommended	CDE
3	Quality of Life - Stigma illness other peer make fun recent assessment scale	The scale representing how often the participant found that others his or her age made fun of him or her lately, as part of Neuro-QOL Stigma.	QoLStgmIllnssOthMkeFunRcntScl	Recommended	CDE
4	Quality of Life - Stigma illness embarrassment in front other peer recent assessment scale	The scale representing how often the participant felt embarrassed when he or she was in front of others his or her age lately, as part of Neuro-QOL Stigma.	QoLStgmIllnssEmbrmntOthRcntScl	Recommended	CDE
5	Quality of Life - Stigma illness unfair treatment recent assessment scale	The scale representing how often the participant was treated unfairly by others because of their illness lately, as part of Neuro-QOL Stigma.	QoLStgmIllnssUnfrTrtmntRcntScl	Recommended	CDE
6	Quality of Life - Stigma illness good point ignore recent assessment scale	The scale representing how often the participant found that others his or her age tened to ignore his or her good points lately, as part of Neuro-QOL Stigma.	QoLStgmIllnssGdPntIgnrRcntScl	Recommended	CDE
7	Quality of Life - Stigma illness different feeling recent assessment scale	The scale representing how often the participant felt different from others his or her age lately, as part of Neuro-QOL Stigma.	QoLStgmIllnssDiffFeelRcntScl	Recommended	CDE
8	Quality of Life - Stigma illness avoid new friend recent assessment scale	The scale representing how often the participant avoided making new friends to avoid talking about his or her illness lately, as part of Neuro-QOL Stigma.	QoLStgmIllnssAvdNewFrndRcntScl	Recommended	CDE
9	Quality of Life - Stigma illness bullied recent assessment scale	The scale representing how often the participant found that others his or her age bullied him or her lately, as part of Neuro-QOL Stigma.	QoLStgmIllnssBulliedRcntScl	Recommended	CDE
10	Quality of Life - Stigma illness other peer seem uncomfortable recent assessment scale	The scale representing how often the participant found that others his or her age seemed uncomfortable with him or her lately, as part of Neuro-QOL Stigma.	QoLStgmIllnssOthUncomfRcntScl	Recommended	CDE
11	Quality of Life - Stigma illness other peer mean recent assessment scale	The scale representing how often the participant found that others his or her age were mean to him or her lately, as part of Neuro-QOL Stigma.	QoLStgmIllnssOthrPrMeanRcntScl	Recommended	CDE
12	Quality of Life - Stigma illness other peer stare recent assessment scale	The scale representing how often the participant found that others his or her age tended to stare at him or her lately, as part of Neuro-QOL Stigma.	QoLStgmIllnssOthrStareRcntScl	Recommended	CDE
13	Quality of Life - Stigma illness peer thought worry recent assessment scale	The scale representing how often the participant was worried about what others his or her age thought about him or her lately, as part of Neuro-QOL Stigma.	QoLStgmIllnssThoughtWryRcntScl	Recommended	CDE
14	Quality of Life - Stigma illness affect appearance unhappiness recent assessment scale	The scale representing how often the participant was unhappy about the way their illness affected their appearance lately, as part of Neuro-QOL Stigma.	QoLStgmIlnssApprncUnhpyRcntScl	Recommended	CDE
15	Quality of Life - Stigma illness parent life hard worry recent assessment scale	The scale representing how often the participant was worried that he or she had made life harder for his or her parent or guardians lately, as part of Neuro-QOL Stigma.	QoLStgmIllnssPrntLfeHrdRcntScl	Recommended	CDE
16	Quality of Life - Stigma illness embarassment recent assessment scale	The scale representing how often the participant felt embarassed about their illness lately, as part of Neuro-QOL Stigma.	QoLStgmaIllnssEmbrssmtRcntScl	Recommended	CDE
17	Quality of Life - Stigma illness speech embarressment recent assessment scale	The scale representing how often the participant felt embarrassed about the way he or she talks lately, as part of Neuro-QOL Stigma.	QoLStgmIllnssSpchEbrmntRcntScl	Recommended	CDE
18	Quality of Life - Stigma illness lost friend recent assessment scale	The scale representing how often the participant lost friends by telling them that they have this illness lately, as part of Neuro-QOL Stigma.	QoLStgmIlnssLostFriendRcntScl	Recommended	CDE

NeuroQol Scoring (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

Keywords

Change History