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

Form Structure: Neuro-QoL Upper Extremity Function Long Form

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

Title:

Neuro-QoL Upper Extremity Function Long Form

Short Name:

NeuroQoLUpprExtmtyFunctnLF

Description:

Disease:

Traumatic Brain Injury General (For all diseases)

Organization:

FITBIR

Required Program Form:

Standardization:

Standard NINDS CDE

Labels:

Form Type:

Clinical Assessment

Version:

1.0

Date Created:

2016-12-28

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

Upper Extremity Function LF (Appears Up To 1 Time)

#	Title	Short Description	Variable Name	Required?	Type
1	Quality of Life - Movement turn key lock ability scale	The scale which represents the extent to which the participant was able to turn a key in a lock, as part of Neuro-QOL Upper Extremity.	QoLMoveTurnKeyLockAbilityScl	Recommended	CDE
2	Quality of Life - Movement brush teeth ability scale	The scale which represents the extent to which the participant was able to brush their teeth, as part of Neuro-QOL Upper Extremity.	QoLMoveBrushTeethAblityScl	Recommended	CDE
3	Quality of Life - Movement touch-tone phone call ability scale	The scale which represents the extent to which the participant was able to make a phone call using a touch tone key-pad, as part of Neuro-QOL Upper Extremity.	QolMoveTouchTneCallAbilityScl	Recommended	CDE
4	Quality of Life - Movement pick up coin ability scale	The scale which represents the extent to which the participant was able to pick up coins from a table top, as part of Neuro-QOL Upper Extremity.	QoLMovePckUpCoinAbltyScl	Recommended	CDE
5	Quality of Life - Movement pen pencil write ability scale	The scale which represents the extent to which the participant was able to write with a pen or pencil, as part of Neuro-QOL Upper Extremity.	QolMovePenPenclWrteAbilityScl	Recommended	CDE
6	Quality of Life - Movement zipper open close ability scale	The scale which represents the extent to which the participant was able to open and close a zipper, as part of Neuro-QOL Upper Extremity.	QoLMoveZipprOpnClseAblityScl	Recommended	CDE
7	Quality of Life - Movement body wash dry ability scale	The scale which represents the extent to which the participant was able to wash and dry their body, as part of Neuro-QOL Upper Extremity.	QoLMoveBodyWashDryAblityScl	Recommended	CDE
8	Quality of Life - Movement shampoo hair ability scale	The scale which represents the extent to which the participant was able to shampoo their hair, as part of Neuro-QOL Upper Extremity.	QoLMoveShampooHairAbilityScl	Recommended	CDE
9	Quality of Life - Movement open prior open jar ability scale	The scale which represents the extent to which the participant was able to open previously opened jars, as part of Neuro-QOL Upper Extremity.	QolMoveOpnPriorOpnJarAbltyScl	Recommended	CDE
10	Quality of Life - Movement full food plate hold ability scale	The scale which represents the extent to which the participant was able to hold a plate full of food, as part of Neuro-QOL Upper Extremity.	QolMoveFulFoodPlatHldAbltyScl	Recommended	CDE
11	Quality of Life - Movement pull trouser on ability scale	The scale which represents the extent to which the participant was able to pull on trousers, as part of Neuro-QOL Upper Extremity.	QolMovePullTrouserOnAbiltyScl	Recommended	CDE
12	Quality of Life - Movement button shirt ability scale	The scale which represents the extent to which the participant was able to button their shirt, as part of Neuro-QOL Upper Extremity.	QolMoveButtonShirtAblityScl	Recommended	CDE
13	Quality of Life - Movement fingernail trim ability scale	The scale which represents the extent to which the participant was able to trim their fingernails, as part of Neuro-QOL Upper Extremity.	QolMoveFingernlTrimAbiltyScl	Recommended	CDE
14	Quality of Life - Movement toenail trim ability scale	The scale which represents the extent to which the participant was able to cut their toe nails, as part of Neuro-QOL Upper Extremity.	QolMoveToenailTrimAbiltyScl	Recommended	CDE
15	Quality of Life - Movement bend down pick up cloth ability scale	The scale which represents the extent to which the participant was able to bend down and pick up clothing from the floor Neuro-QOL Upper Extremity.	QoLMoveBndDwnPckUpClthAbltyScl	Recommended	CDE
16	Quality of Life - Movement spoon eat meal difficulty scale	The scale which represents the amount of difficulty the participant currently has in using a spoon to eat a meal, as part of Neuro-QOL Upper Extremity.	QolMoveSpoonEatMealAbilityScl	Recommended	CDE
17	Quality of Life - Movement dress pullover shirt on difficulty scale	The scale which represents the amount of difficulty the participant currently has in putting on a pullover shirt, as part of Neuro-QOL Upper Extremity.	QolMoveDrssPllvrShrtAblityScl	Recommended	CDE
18	Quality of Life - Movement dress pullover shirt off difficulty scale	The scale which represents the amount of difficulty the participant currently has in taking off a pullover shirt, as part of Neuro-QOL Upper Extremity.	QoLMoveDrssPllovrOffAbilityScl	Recommended	CDE
19	Quality of Life - Movement small object remove wrap difficulty scale	The scale which represents the amount of difficulty the participant currently has in removing wrappings from small objects, as part of Neuro-QOL Upper Extremity.	QoLMoveSmllObjtRmvWrpAblityScl	Recommended	CDE
20	Quality of Life - Movement medication open difficulty scale	The scale which represents the amount of difficulty the participant currently has in opening medications or vitamin containers (e.g., childproof containers, small bottles) as part of Neuro-QOL Upper Extremity.	QolMoveMedicatnOpnAbiltyScl	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

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