CDE Detailed Report | NINDS Common Data Elements

Disease: Congenital Muscular Dystrophy
Subdomain Name: General Health History
CRF: Interval Medical History

Displaying 1 - 47 of 47

CDE ID	CDE Name	Variable Name	Definition	Short Description	Question Text	Permissible Values	Description	Data Type	Disease Specific Instructions	Disease Specific Reference	Population	Classification (e.g., Core)	Version Number	Version Date	CRF Name (CRF Module / Guidance)	Subdomain Name	Domain Name	Size	Input Restrictions	Min Value	Max Value	Measurement Type
C19884	Motor function history maintain indicator	MotorFuncHistMaintnInd	Indicator of motor function history maintained	Indicator of motor function history maintained	Still maintained?	No;Yes	No;Yes	Alphanumeric	No instructions available	No references available	Adult;Pediatric	Supplemental	1.00	2015-02-06 00:00:00.0	Interval Medical History	General Health History	Participant History and Family History		Single Pre-Defined Value Selected
C19852	Medical history aspiration choking since last visit indicator	MedHistAspirChokeSLVInd	Indicator of aspiration or choking since last study visit	Indicator of aspiration or choking since last study visit	Have you had any aspiration or choking episodes since your last visit?	No;Yes	No;Yes	Alphanumeric	No instructions available	No references available	Adult;Pediatric	Supplemental	1.00	2015-02-06 00:00:00.0	Interval Medical History	General Health History	Participant History and Family History		Single Pre-Defined Value Selected
C19863	Medical history self feed increase difficulty indicator	MedHistSelfFeedIncDifInd	Indicator of self-feed difficulty	Indicator of self-feed difficulty	Has it become more difficult to feed yourself?	No;Yes	No;Yes	Alphanumeric	No instructions available	No references available	Adult;Pediatric	Supplemental	1.00	2015-02-06 00:00:00.0	Interval Medical History	General Health History	Participant History and Family History		Single Pre-Defined Value Selected
C19842	Medical history hospitalizations since last visit indicator	MedHistHosptlSLVInd	Indicator of hospitilizations since last study visit	Indicator of hospitilizations since last study visit	Have you had any hospitalizations since your last study visit(s)?	No;Yes	No;Yes	Alphanumeric	Any new hospitalizations since the last visit should be recorded on the Surgical and Hospital History.	No references available	Adult;Pediatric	Supplemental	1.00	2015-02-06 00:00:00.0	Interval Medical History	General Health History	Participant History and Family History		Single Pre-Defined Value Selected
C19874	Medical history scoliosis development since last visit indicator	MedHistScolDvlpmntSLVInd	Indicator of scoliosis development since last visit	Indicator of scoliosis development since last visit	Have you developed scoliosis since your last study visit?	No;Yes	No;Yes	Alphanumeric	If the participant/subject developed scoliosis since the last visit, it should be recorded on the AE CRF.	No references available	Adult;Pediatric	Supplemental	1.00	2015-02-06 00:00:00.0	Interval Medical History	General Health History	Participant History and Family History		Single Pre-Defined Value Selected
C19885	Motor function history age lost function value	MotorFuncHistAgeLostFuncVal	Age lost number	Age lost number	Age lost (years)			Numeric Values	Age should be recorded in years	No references available	Adult;Pediatric	Supplemental	1.00	2015-02-06 00:00:00.0	Interval Medical History	General Health History	Participant History and Family History		Free-Form Entry	0	100	Years old
C19853	Medical history cough assist since last visit indicator	MedHistCghAstSLVInd	Indicator of cough assist since last visit	Indicator of cough assist since last visit	Have you started using mechanical in/ex-sufflation (cough assist) since your last visit?	No;Yes	No;Yes	Alphanumeric	No instructions available	No references available	Adult;Pediatric	Supplemental	1.00	2015-02-06 00:00:00.0	Interval Medical History	General Health History	Participant History and Family History		Single Pre-Defined Value Selected
C19864	Medical history physical therapy change since last visit indicator	MedHistPTChngSLVInd	Indicaor of change in physical therapy since last visit	Indicaor of change in physical therapy since last visit	Have you had a change in how much physical therapy you receive since your last visit?	No;Yes	No;Yes	Alphanumeric	No instructions available	No references available	Adult;Pediatric	Supplemental	1.00	2015-02-06 00:00:00.0	Interval Medical History	General Health History	Participant History and Family History		Single Pre-Defined Value Selected
C19843	Medical history emergency room visits since last visit indicator	MedHistEmrgyRmSLVInd	Indicator of emergency room visits since last study visit	Indicator of emergency room visits since last study visit	Have you had any ER visits since your last study visit(s)?	No;Yes	No;Yes	Alphanumeric	Any new ER visits since the last visit should be recorded on the Surgical and Hospital History.	No references available	Adult;Pediatric	Supplemental	1.00	2015-02-06 00:00:00.0	Interval Medical History	General Health History	Participant History and Family History		Single Pre-Defined Value Selected
C19875	Medical history seizures since last visit indicator	MedHistSeizSLVInd	Indicator of seizures since last visit	Indicator of seizures since last visit	Have you had any seizures since your last study visit?	No;Yes	No;Yes	Alphanumeric	Any seizures since the last visit should be recorded on the AE CRF.	No references available	Adult;Pediatric	Supplemental	1.00	2015-02-06 00:00:00.0	Interval Medical History	General Health History	Participant History and Family History		Single Pre-Defined Value Selected
C19886	Motor function history lost function date	MotorFuncHistLostFuncDt	Date of motor function lost	Date of motor function lost	Date Lost (YYYY/MM)			Date or Date & Time	Date should be recorded in the format MM/YYYY.	No references available	Adult;Pediatric	Supplemental	1.00	2015-02-06 00:00:00.0	Interval Medical History	General Health History	Participant History and Family History		Free-Form Entry
C19854	Medical history scoliosis surgery since last visit indicator	MedHistScolSurgSLVInd	Indicator of scoliosis surgery since last study visit	Indicator of scoliosis surgery since last study visit	Have you had any scoliosis surgeries since your last study visit?	No;Yes	No;Yes	Alphanumeric	Any new scoliosis surgery since the last visit should be recorded on the Surgical and Hospital History.	No references available	Adult;Pediatric	Supplemental	1.00	2015-02-06 00:00:00.0	Interval Medical History	General Health History	Participant History and Family History		Single Pre-Defined Value Selected
C19865	Medical history physical therapy change since last visit frequency	MedHistPTChngSLVFreq	Frequency of change in physical therapy since last visit	Frequency of change in physical therapy since last visit	If Yes, how much change in physical therapy since your last visit?	Increased;Decreased;Don't go to physical therapy	Increased;Decreased;Don't go to physical therapy	Alphanumeric	No instructions available	No references available	Adult;Pediatric	Supplemental	1.00	2015-02-06 00:00:00.0	Interval Medical History	General Health History	Participant History and Family History		Single Pre-Defined Value Selected
C19844	Medical history wheezing since last visit indicator	MedHistWheezeSLVInd	Indicator of wheezing since last visit	Indicator of wheezing since last visit	Have you had any wheezing since your last visit?	No;Yes	No;Yes	Alphanumeric	Any new incidents of wheezing since the last visit should be recorded on the Surgical and Hospital History.	No references available	Adult;Pediatric	Supplemental	1.00	2015-02-06 00:00:00.0	Interval Medical History	General Health History	Participant History and Family History		Single Pre-Defined Value Selected
C19876	Medical history behavior issue since last visit indicator	MedHistBehvrIssueSLVInd	Indicator of behavioral issues since last visit	Indicator of behavioral issues since last visit	Have you had behavioral issues since your last study visit?	No;Yes	No;Yes	Alphanumeric	Any behavioral issues since the last visit should be recorded on the AE CRF.	No references available	Adult;Pediatric	Supplemental	1.00	2015-02-06 00:00:00.0	Interval Medical History	General Health History	Participant History and Family History		Single Pre-Defined Value Selected
C19855	Medical history other surgery since last visit indicator	MedHistOthSurgSLVInd	Indicator of other surgery performed since last study visit	Indicator of other surgery performed since last study visit	Have you had any other surgery since your last study visit?	No;Yes	No;Yes	Alphanumeric	Any new surgery since the last visit should be recorded on the Surgical and Hospital History.	No references available	Adult;Pediatric	Supplemental	1.00	2015-02-06 00:00:00.0	Interval Medical History	General Health History	Participant History and Family History		Single Pre-Defined Value Selected
C19866	Medical history speech therapy since last visit indicator	MedHistSpchThrpySLVInd	Indicator of change in speech therapy since last visit	Indicator of change in speech therapy since last visit	Have you had a change in how much speech therapy you receive since your last visit?	No;Yes	No;Yes	Alphanumeric	No instructions available	No references available	Adult;Pediatric	Supplemental	1.00	2015-02-06 00:00:00.0	Interval Medical History	General Health History	Participant History and Family History		Single Pre-Defined Value Selected
C19845	Medical history intubated since last visit indicator	MedHistIntubatedSLVInd	Indicator of intubation since last study visit	Indicator of intubation since last study visit	Have you been intubated since your last visit?	No;Yes	No;Yes	Alphanumeric	Any new incidents of intubation since the last visit should be recorded on the Surgical and Hospital History.	No references available	Adult;Pediatric	Supplemental	1.00	2015-02-06 00:00:00.0	Interval Medical History	General Health History	Participant History and Family History		Single Pre-Defined Value Selected
C19877	Medical history depression since last visit indicator	MedHistDepressSLVInd	Indicator of depression since last study visit	Indicator of depression since last study visit	Have you developed depression since your last study visit?	No;Yes	No;Yes	Alphanumeric	Development of depression since the last visit should be recorded on the AE CRF.	No references available	Adult;Pediatric	Supplemental	1.00	2015-02-06 00:00:00.0	Interval Medical History	General Health History	Participant History and Family History		Single Pre-Defined Value Selected
C19856	Medical history gastrostomy tube since last visit indicator	MedHistGtubeSLVInd	Indicator of Gtube placed since last study visit	Indicator of Gtube placed since last study visit	Have you had a G-Tube placed since your last study visit?	No;Yes	No;Yes	Alphanumeric	No instructions available	No references available	Adult;Pediatric	Supplemental	1.00	2015-02-06 00:00:00.0	Interval Medical History	General Health History	Participant History and Family History		Single Pre-Defined Value Selected
C19867	Medical history speech therapy since last visit frequency	MedHistSpchThrpySLVFreq	Frequency of change in speech therapy since last visit	Frequency of change in speech therapy since last visit	If Yes, how much change in speech therapy since your last visit?	Increased;Decreased;Don't go to speech therapy	Increased;Decreased;Don't go to speech therapy	Alphanumeric	No instructions available	No references available	Adult;Pediatric	Supplemental	1.00	2015-02-06 00:00:00.0	Interval Medical History	General Health History	Participant History and Family History		Single Pre-Defined Value Selected
C19846	Medical history tracheostomy since last visit indicator	MedHistTracheostomySLVInd	Indicator of tracheostomy since last visit indicator	Indicator of tracheostomy since last visit indicator	Have you had a tracheostomy since your last visit?	No;Yes	No;Yes	Alphanumeric	Any new tracheostomy since the last visit should be recorded on the Surgical and Hospital History.	No references available	Adult;Pediatric	Supplemental	1.00	2015-02-06 00:00:00.0	Interval Medical History	General Health History	Participant History and Family History		Single Pre-Defined Value Selected
C19878	Meical history anxiety development since last visit indicator	MedHistAnxDvlpmntSLVInd	Indicator of anxiety since last study visit	Indicator of anxiety since last study visit	Have you developed anxiety since your last study visit?	No;Yes	No;Yes	Alphanumeric	Development of anxiety since the last visit should be recorded on the AE CRF.	No references available	Adult;Pediatric	Supplemental	1.00	2015-02-06 00:00:00.0	Interval Medical History	General Health History	Participant History and Family History		Single Pre-Defined Value Selected
C19857	Medical history new contracture since last visit indicator	MelHistCntrcturesSLVInd	Indicator of new contractures since last study visit	Indicator of new contractures since last study visit	Have you had any new contractures since your last study visit?	No;Yes	No;Yes	Alphanumeric	No instructions available	No references available	Adult;Pediatric	Supplemental	1.00	2015-02-06 00:00:00.0	Interval Medical History	General Health History	Participant History and Family History		Single Pre-Defined Value Selected
C19868	Medical history congenital muscular dystrophy Limb-Girdle muscular dystrophy genetic confirmation spectrum disorder since last visit indicator	MedHistCMDLGMDGntCnSLVInd	Indicator of genetic confirmation of CMD to LGMD spectrum since last visit	Indicator of genetic confirmation of CMD to LGMD spectrum since last visit	Have you had a genetic confirmation of CMD to LGMD spectrum disorder since your last visit?	No;Yes	No;Yes	Alphanumeric	No instructions available	No references available	Adult;Pediatric	Supplemental	1.00	2015-02-06 00:00:00.0	Interval Medical History	General Health History	Participant History and Family History		Single Pre-Defined Value Selected
C19847	Medical history bilevel positive airway pressure ventilator since last visit indicator	MedHistBiPAPVentltrSLVInd	Indicator of bilevel positive airway pressure or ventilator adjusted since last visit	Indicator of bilevel positive airway pressure or ventilator adjusted since last visit	Have your BiPAP/Ventilator settings been adjusted since your last visit?	No;Yes	No;Yes	Alphanumeric	Review NIV (BiPAP/Ventilator settings on Intake Medical History with Family	No references available	Adult;Pediatric	Supplemental	1.00	2015-02-06 00:00:00.0	Interval Medical History	General Health History	Participant History and Family History		Single Pre-Defined Value Selected
C19879	Medical history upper respiratory infection since last visit indicator	MedHistURISLVInd	Indicator of upper respiratory infections since last study visit	Indicator of upper respiratory infections since last study visit	Have you had frequent upper respiratory infections (URI) since your last study visit?	No;Yes	No;Yes	Alphanumeric	Any upper respiratory infections since the last visit should be recorded on the AE CR.	No references available	Adult;Pediatric	Supplemental	1.00	2015-02-06 00:00:00.0	Interval Medical History	General Health History	Participant History and Family History		Single Pre-Defined Value Selected
C19858	Medical history broken bones since last visit indicator	MedHistBrknBonesSLVInd	Indicator of broken bones since last study visit	Indicator of broken bones since last study visit	Have you broken a bone since your last study visit?	No;Yes	No;Yes	Alphanumeric	No instructions available	No references available	Adult;Pediatric	Supplemental	1.00	2015-02-06 00:00:00.0	Interval Medical History	General Health History	Participant History and Family History		Single Pre-Defined Value Selected
C19869	Medical history gene mutation text	MedHistGeneMutatTxt	Text specifying which gene has been mutated to confirm CMD to LGMD spectrum	Text specifying which gene has been mutated to confirm CMD to LGMD spectrum	If Yes, which gene has been identified as mutated?			Alphanumeric	Only answered if Interval Disease Progression or Accidents question #10 is Yes	No references available	Adult;Pediatric	Supplemental	1.00	2015-02-06 00:00:00.0	Interval Medical History	General Health History	Participant History and Family History	4000	Free-Form Entry
C19848	Medical History non-invasive ventilation setting type	MedHistNIVSettingTyp	Type of NIV settings made	Type of NIV settings made	If Yes, NIV settings:	IPAP;EPAP	IPAP;EPAP (Expiratory positive airway pressure)	Alphanumeric	Only answered if BiPAP settings have been adjusted since the last visit.	No references available	Adult;Pediatric	Supplemental	1.00	2015-02-06 00:00:00.0	Interval Medical History	General Health History	Participant History and Family History		Single Pre-Defined Value Selected
C19880	Medical history upper respiratory infection frequency	MedHistURIFreq	Frequency of upper respiratory infection	Frequency of upper respiratory infection	If Yes, how frequent?	None;1-2;3-4;>5	None;1-2;3-4;>5	Alphanumeric	No instructions available	No references available	Adult;Pediatric	Supplemental	1.00	2015-02-06 00:00:00.0	Interval Medical History	General Health History	Participant History and Family History		Single Pre-Defined Value Selected
C19859	Medical history joint dislocation since last visit indicator	MedHistJointDislocSLVInd	Indicator of joint dislocations since last study visit	Indicator of joint dislocations since last study visit	Have you dislocated a joint since your last study visit?	No;Yes	No;Yes	Alphanumeric	No instructions available	No references available	Adult;Pediatric	Supplemental	1.00	2015-02-06 00:00:00.0	Interval Medical History	General Health History	Participant History and Family History		Single Pre-Defined Value Selected
C19870	Medical history arrhythmias since last visit indicator	MedHistArrhymSLVInd	Indicator of arrhythmias since last study visit	Indicator of arrhythmias since last study visit	Have you had any arrhythmias (heart rhythm problem) since your last study visit?	No;Yes	No;Yes	Alphanumeric	Any arrhythmias since the last visit should be recorded on the AE CRF.	No references available	Adult;Pediatric	Supplemental	1.00	2015-02-06 00:00:00.0	Interval Medical History	General Health History	Participant History and Family History		Single Pre-Defined Value Selected
C19849	Medical history ventilator setting type	MedHistVentltSettingTyp	Type of Ventilator settings	Type of Ventilator settings	If Yes, ventilator settings:	Tidal Volume;PEEP;Backup rate	Tidal Volume;PEEP;Backup rate	Alphanumeric	Only answered if Ventilator settings have been adjusted since the last visit.	No references available	Adult;Pediatric	Supplemental	2.00	2017-01-26 00:00:00.0	Interval Medical History	General Health History	Participant History and Family History		Single Pre-Defined Value Selected
C19881	Medical history pain since last visit indicator	MedHistPainSLVInd	Indicator of pain in a new location since last study visit	Indicator of pain in a new location since last study visit	Have you had pain in a new location since your last study visit?	No;Yes	No;Yes	Alphanumeric	Any pain in a new location since the last visit should be recorded on the AE CRF.	No references available	Adult;Pediatric	Supplemental	1.00	2015-02-06 00:00:00.0	Interval Medical History	General Health History	Participant History and Family History		Single Pre-Defined Value Selected
C19860	Medical history strength change since last visit status	MedHistStrngthChngSLVStat	Indicator of change in strength since last study visit	Indicator of change in strength since last study visit	Have you noticed any change in strength since your last study visit?	No change;Yes, I feel stronger;Yes, I feel weaker	No change;Yes, I feel stronger;Yes, I feel weaker	Alphanumeric	No instructions available	No references available	Adult;Pediatric	Supplemental	1.00	2015-02-06 00:00:00.0	Interval Medical History	General Health History	Participant History and Family History		Single Pre-Defined Value Selected
C19871	Medical history cardiomyopathy since last visit indicator	MedHistCardiomyopathyInd	Indicator of cardiomyopathy since last visit	Indicator of cardiomyopathy since last visit	Have you had cardiomyopathy (enlarged heart) since your last study visit?	No;Yes	No;Yes	Alphanumeric	Any cardiomyopathy since the last visit should be recorded on the AE CRF.	No references available	Adult;Pediatric	Supplemental	1.00	2015-02-06 00:00:00.0	Interval Medical History	General Health History	Participant History and Family History		Single Pre-Defined Value Selected
C19850	Medical history non-invasive ventilation adjusted setting text	MedHistNIVAdjTxt	Text specifying any adjustments made to non-invasive ventilation settings	Text specifying any adjustments made to non-invasive ventilation settings	If Yes, NIV settings:			Alphanumeric	Only answered if BiPAP settings have been adjusted since the last visit. Record any adjustments made to BiPAP settings.	No references available	Adult;Pediatric	Supplemental	1.00	2015-02-06 00:00:00.0	Interval Medical History	General Health History	Participant History and Family History	4000	Free-Form Entry
C19882	Medical history pain location anatomic site	MedclHistPainLocAnatSite	Anatomic site of pain	Anatomic site of pain	If Yes, which joints had pain?	Neck;Shoulder;Elbows;Wrists;Fingers;Hips;Knees;Ankles	Neck;Shoulder;Elbows;Wrists;Fingers;Hips;Knees;Ankles	Alphanumeric	No instructions available	No references available	Adult;Pediatric	Supplemental	1.00	2015-02-06 00:00:00.0	Interval Medical History	General Health History	Participant History and Family History		Single Pre-Defined Value Selected
C19861	Medical history roll in bed unassisted since last visit status	MedHistRollBedAssiSLVStatus	Status of assistance needed to roll over in bed since last study visit	Status of assistance needed to roll over in bed since last study visit	Are you able to roll over in bed unassisted?	Yes, I can roll over completely from back to front;Yes, I can roll to my side;No, I cannot roll over on my own	Yes, I can roll over completely from back to front;Yes, I can roll to my side;No, I cannot roll over on my own	Alphanumeric	No instructions available	No references available	Adult;Pediatric	Supplemental	1.00	2015-02-06 00:00:00.0	Interval Medical History	General Health History	Participant History and Family History		Single Pre-Defined Value Selected
C19840	Medical history medication change since last visit indicator	MedHistMedctnChngeSLVInd	Indicator of medication changes since last study visit	Indicator of medication changes since last study visit	Have you had any medication changes since your last visit?	No;Yes	No;Yes	Alphanumeric	Any new medications since the last visit should be recorded on the Prior and Concomitant Medications CRF.	No references available	Adult;Pediatric	Supplemental	1.00	2015-02-06 00:00:00.0	Interval Medical History	General Health History	Participant History and Family History		Single Pre-Defined Value Selected
C19872	Medical history urinary tract infection since last visit indicator	MedHistUTISLVInd	Indicator of UTI since last study visit	Indicator of UTI since last study visit	Have you had frequent urinary tract infections (UTI) since your last study visit?	No;Yes	No;Yes	Alphanumeric	Any urinary tract infections since the last visit should be recorded on the AE CRF.	No references available	Adult;Pediatric	Supplemental	1.00	2015-02-06 00:00:00.0	Interval Medical History	General Health History	Participant History and Family History		Single Pre-Defined Value Selected
C19851	Medical history ventilator adjusted setting text	MedHistVentltAdjTxt	Text specifying any adjustments made to ventilator settings	Text specifying any adjustments made to ventilator settings	If Yes, ventilator settings:			Alphanumeric	Only answered if Ventilator settings have been adjusted since the last visit. Record any adjustments made to Ventilator settings. Tidal volume should be reported in "ml" units	No references available	Adult;Pediatric	Supplemental	1.00	2015-02-06 00:00:00.0	Interval Medical History	General Health History	Participant History and Family History	4000	Free-Form Entry
C19883	Motor function history type	MotorFuncHistTyp	Type of motor function	Type of motor function	Motor Function	Able to run;Able to climb stairs using a handrail;Able to walk indoors without assistnace > 10 steps;Able to walk outdoors without assistance > 10 steps;Able to walk with assistance (including walker, calipers, of KAFOs);Able to sit when placed;Able to hold head up	Able to run;Able to climb stairs using a handrail;Able to walk indoors without assistnace > 10 steps;Able to walk outdoors without assistance > 10 steps;Able to walk with assistance (including walker, calipers, of KAFOs);Able to sit when placed;Able to hold head up	Alphanumeric	No instructions available	No references available	Adult;Pediatric	Supplemental	1.00	2015-02-06 00:00:00.0	Interval Medical History	General Health History	Participant History and Family History		Single Pre-Defined Value Selected
C19862	Medical history stumble since last visit indicator	MedHistStmblInd	Indicator of stumbling since last study visit	Indicator of stumbling since last study visit	If walking, have you been falling or stumbling (tripping) more often since your last visit?	No;Yes	No;Yes	Alphanumeric	No instructions available	No references available	Adult;Pediatric	Supplemental	1.00	2015-02-06 00:00:00.0	Interval Medical History	General Health History	Participant History and Family History		Single Pre-Defined Value Selected
C19841	Medical history illness since last visit indicator	MedHistIllnessSLVInd	Indicator of illness since last study visit	Indicator of illness since last study visit	Have you had any illnesses since your last study visit(s)?	No;Yes	No;Yes	Alphanumeric	Any new illnesses since the last visit should be recorded on the Surgical and Hospital History.	No references available	Adult;Pediatric	Supplemental	1.00	2015-02-06 00:00:00.0	Interval Medical History	General Health History	Participant History and Family History		Single Pre-Defined Value Selected
C19873	Medical history urinary tract infection since last visit frequency	MedHistUTISLVFreq	Frequency of UTI since last visit	Frequency of UTI since last visit	If Yes, how frequent?	0;1-2;3-4;>5	0;1-2;3-4;>5	Alphanumeric	No instructions available	No references available	Adult;Pediatric	Supplemental	1.00	2015-02-06 00:00:00.0	Interval Medical History	General Health History	Participant History and Family History		Single Pre-Defined Value Selected