CDE Detailed Report | NINDS Common Data Elements

Disease: Facioscapulohumeral Muscular Dystrophy
Subdomain Name: General Health History
CRF: Medical History

Displaying 1 - 18 of 18

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	Measurement Type	External Id caDSR
C00322	Medical history condition text	MedclHistCondTxt	Verbatim text for the medical condition/disease reported by the participant/subject or documented in the medical record as part of medical history	Verbatim text for the medical condition/disease reported by the participant/subject or documented in the medical record as part of medical history	Medical Condition			Alphanumeric		SNOMED CT Codes (http://www.nlm.nih.gov/research/umls/Snomed/snomed_main.html)	Adult;Pediatric	Core	3.00	2013-07-25 08:54:08.2	Medical History	General Health History	Participant History and Family History	4000	Free-Form Entry		2003874
C19678	Associated Disease Condition Type	AssoctdDzConditnType	Type of disease or medical condition that is commonly associated with the primary disease under investigation	Type of disease or medical condition that is commonly associated with the primary disease under investigatio	Type			Alphanumeric	This question should be explicitly asked to ensure a complete medical history is documented for conditions commonly associated with Facioscapulohumeral muscular dystrophy.		Adult;Pediatric	Supplemental	1.00	2015-01-29 09:29:25.0	Medical History	General Health History	Participant History and Family History	255	Free-Form Entry
C08006	Symptoms first appear date and time	SymptmFirstAppearDateTime	Date (and time if applicable and known) the symptoms for the disease or disorder first appeared as confirmed by the participant's/subject's medical history obtained by a physician	Date (and time if applicable and known) the symptoms for the disease or disorder first appeared as confirmed by the participant's/subject's medical history obtained by a physician	Date of first symptom			Date or Date & Time			Adult;Pediatric	Supplemental	3.10	2022-06-01 10:41:43.0	Medical History	General Health History	Participant History and Family History		Free-Form Entry
C08007	Diagnosis first given date and time	DiagnosFirstGivnDateTime	Date (and time if applicable and known) the participant/subject was initially diagnosed with the disease or disorder	Date (and time if applicable and known) the participant/subject was initially diagnosed with the disease or disorder	Date at diagnosis			Date or Date & Time			Adult;Pediatric	Supplemental	3.00	2013-07-24 11:38:01.2	Medical History	General Health History	Participant History and Family History		Free-Form Entry
C10501	Diagnosis initial age value	DiagnosAgeVal	Age of the participant/subject when initially diagnosed with disease/disorder	Age of the participant/subject when initially diagnosed with disease/disorder	Age at diagnosis			Numeric Values	Answer should be recorded in years. History can be obtained from participant/ subject, family member, friend, or chart/ medical record.	No references available	Adult;Pediatric	Supplemental	3.00	2013-07-24 16:29:10.887	Medical History	General Health History	Participant History and Family History		Free-Form Entry	year
C18241	Diagnosis age value unit of measure	DiagnosAgeValUOM	Unit of measure for age value of the participant when initially diagnosed with disease/disorder	Unit of measure for age value of the participant when initially diagnosed with disease/disorder	Age at diagnosis	years;Months;Weeks;Days;Hours	years;Months;Weeks;Days;Hours	Alphanumeric	Choose only one	No references available	Adult;Pediatric	Supplemental	4.00	2024-02-02 12:33:19.0	Medical History	General Health History	Participant History and Family History		Single Pre-Defined Value Selected
C00312	Body system category	BodySysCat	Category or grouping used in the comprehensive assessment of a participant/subject, which includes a subjective history taking component as well as an objective based structured interview and physical examination of all the body systems	Category or grouping used in the comprehensive assessment of a participant/subject, which includes a subjective history taking component as well as an objective based structured interview and physical examination of all the body system	Body system category	Allergic/Immunologic;Cardiovascular;Constitutional symptoms (e.g., fever, weight loss);Dermatological;Ears, Nose, Mouth, Throat;Endocrine;Eyes;Gastrointestinal;Gastrointestinal/Abdominal;Genitourinary;Gynecologic/Urologic/ Renal;Hematologic/Lymphatic;Hepatobiliary;Integumentary (skin and/or breast);Musculoskeletal;Musculoskeletal (separate from ALS exam);Neurological;Neurologic/CNS;Neurological (separate from ALS exam);Oncologic;Psychiatric;Pulmonary;Respiratory;Other, specify:	Allergic/Immunologic;Cardiovascular;Constitutional symptoms (e.g., fever, weight loss);Dermatological;Ears, Nose, Mouth, Throat;Endocrine;Eyes;Gastrointestinal;Gastrointestinal/Abdominal;Genitourinary;Gynecologic/Urologic/ Renal;Hematologic/Lymphatic;Hepatobiliary;Integumentary (skin and/or breast);Musculoskeletal;Musculoskeletal (separate from ALS exam);Neurological;Neurologic/CNS;Neurological (separate from ALS exam);Oncologic;Psychiatric;Pulmonary;Respiratory;Other, specify:	Alphanumeric		Review of Symptoms from Centers for Medicare and Medicaid Services https://www.cms.gov/Outreach-and-Education/Medicare-Learning-Network-MLN/MLNProducts/downloads/eval_mgmt_serv_guide-ICN006764.pdf	Adult;Pediatric	Supplemental	3.00	2013-07-25 08:54:08.2	Medical History	General Health History	Participant History and Family History		Single Pre-Defined Value Selected		2002895
C18242	Symptoms first appeared age value	SymptmFrstApprAgVal	Value of the age at which the participant/subject first noted a neuromuscular symptom	Value of the age at which the participant/subject first noted a neuromuscular symptom	Age at first symptom			Numeric Values		No references available	Adult;Pediatric	Supplemental	3.00	2013-07-21 12:11:21.037	Medical History	General Health History	Participant History and Family History		Free-Form Entry
C00313	Medical history condition SNOMED CT code	MedclHistCondSNOMEDCTCode	Systematized Nomenclature Of Medicine Clinical Terms (SNOMED CT) code for medical condition/disease reported by the participant/subject	Systematized Nomenclature Of Medicine Clinical Terms (SNOMED CT) code for medical condition/disease reported by the participant/subject	SNOMED CT code			Alphanumeric	Code each of the medical history conditions using SNOMED CT	SNOMED CT Codes (http://www.nlm.nih.gov/research/umls/Snomed/snomed_main.html)	Adult;Pediatric	Core	3.00	2013-07-25 08:54:08.2	Medical History	General Health History	Participant History and Family History	255	Free-Form Entry
C18243	Symptom first appear age type	SymptmFrstApprAgTyp	Type of age of the participant/subject at first symptom appearance	Type of age of the participant/subject at first symptom appearance	Age at first symptom	years;Months;Weeks;Days;Hours	years;Months;Weeks;Days;Hours	Alphanumeric	Choose only one	No references available	Adult;Pediatric	Supplemental	3.00	2013-07-21 12:11:21.037	Medical History	General Health History	Participant History and Family History		Single Pre-Defined Value Selected
C00314	Medical history taken date and time	MedclHistTakenDateTime	Date (and time, if applicable and known) the participant's medical history was taken	Date (and time, if applicable and known) the participant 's medical history was taken	Date Medical History Taken:			Date or Date & Time	Record the date/time according to the ISO 8601, the International Standard for the representation of dates and times (http://www.iso.org/iso/home.html). The date/time should be recorded to the level of granularity known (e.g., year, year and month, complete date plus hours and minutes, etc.).	No references available	Adult;Pediatric	Supplemental	3.20	2024-02-29 15:42:39.0	Medical History	General Health History	Participant History and Family History		Free-Form Entry		2179659
C18254	Medical history assessment indicator	MedclHistAssmtInd	Whether the participant/subject has a history of any medical problems/conditions	Whether the participant/subject has a history of any medical problems/conditions	History of any medical problems or conditions?	Yes;No;Unknown	Yes;No;Unknown	Alphanumeric		No references available	Adult;Pediatric	Supplemental	3.00	2013-07-21 12:11:21.037	Medical History	General Health History	Participant History and Family History		Single Pre-Defined Value Selected		3145578
C00316	Medical history condition end date and time	MedclHistCondEndDateTime	Date (and time, if applicable and known) for the end of an event in the participant's medical history	Date (and time, if applicable and known) for the end of an event in the participant's medical history	End Date			Date or Date & Time	Record the date the medical condition/disease ended. Record the date/time according to the ISO 8601, the International Standard for the representation of dates and times (http://www.iso.org/iso/home.html). The date/time should be recorded to the level of granularity known (e.g., year, year and month, complete date plus hours and minutes, etc.) and in the format acceptable to the study database.	No references available	Adult;Pediatric	Supplemental	3.10	2024-02-29 15:42:44.0	Medical History	General Health History	Participant History and Family History		Free-Form Entry		3145557
C19519	Disease condition associated name	DiseaseConditionAssociatedName	Name of associated disease/condition	Name of associated disease/condition	Associated Disease/Condition	Hearing Loss;Retinal vascular disease;Coats' disease;Restrictive Lung Disease;Epilepsy/Seizures;Developmental Cognitive Impairment;Other disease/condition, specify	Hearing Loss;Retinal vascular disease;Coats' disease;Restrictive Lung Disease;Epilepsy/Seizures;Developmental Cognitive Impairment;Other disease/condition, specify	Alphanumeric			Adult;Pediatric	Supplemental	1.00	2014-07-11 08:54:47.0	Medical History	General Health History	Participant History and Family History		Single Pre-Defined Value Selected
C00317	Medical history condition start date and time	MedclHistCondStrtDateTime	Date (and time, if applicable and known) for the start of an event in the participant's medical history	Date (and time, if applicable and known) for the start of an event in the participant's medical history	Start Date			Date or Date & Time	Record the date the medical condition/disease started. Record the date/time according to the ISO 8601, the International Standard for the representation of dates and times (http://www.iso.org/iso/home.html). The date/time should be recorded to the level of granularity known (e.g., year, year and month, complete date plus hours and minutes, etc.) and in the format acceptable to the study database.	No references available	Adult;Pediatric	Supplemental	3.10	2024-02-29 15:42:43.0	Medical History	General Health History	Participant History and Family History		Free-Form Entry		2543596
C19520	Subject affected indicator	SubjectAffectedInd	Indicator for the subject's being affected	Indicator for the subject's being affected	Subject Affected?	No;Yes	No;Yes	Alphanumeric	This question is asked to ensure a complete medical history is documented for conditions commonly associated with Facioscapulohumeral muscular dystrophy.		Adult;Pediatric	Supplemental	1.00	2014-07-11 09:17:35.0	Medical History	General Health History	Participant History and Family History		Single Pre-Defined Value Selected
C00319	Medical history condition ongoing indicator	MedclHistCondOngoingInd	Indicator of whether a medical condition/disease experienced by the participant is ongoing	Indicator of whether a medical condition/disease experienced by the participant is ongoing	Continuing?	Yes;No;Unknown	Yes;No;Unknown	Alphanumeric	Check Yes or No to indicate if the medical condition/disease is still present.	No references available	Adult;Pediatric	Supplemental	4.00	2024-02-29 15:42:44.0	Medical History	General Health History	Participant History and Family History		Single Pre-Defined Value Selected		2736881
C19525	Disease/condition associated other specify text	DiseasCondnAssocdOTHTxt	Free text field that specifies the associated disease or condition	Free text field that specifies the associated disease or condition	Other disease/condition, specify:			Alphanumeric	This question is asked to ensure a complete medical history is documented for conditions commonly associated with Facioscapulohumeral muscular dystrophy.		Adult;Pediatric	Supplemental	1.00	2014-07-14 09:54:37.0	Medical History	General Health History	Participant History and Family History	4000	Free-Form Entry