CDE Detailed Report | NINDS Common Data Elements

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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	External Id caDSR
C19204	Pre-existing congenital deformity specify anatomic site	CongentlDeformSpcfyAntmicSite	Anatomic site of pre-existing congenital deformity of spine and spinal cord	Anatomic site of pre-existing congenital deformity of spine and spinal cord	If yes, specify diagnosis and location			Alphanumeric			Adult;Pediatric	Supplemental	1.00	2014-06-03 14:57:24.0	International SCI Musculoskeletal Basic Data Set	The International SCI Data Sets	The International SCI Data Sets	4000	Free-Form Entry
C02411	Laterality type	LatTyp	Laterality type relative to the anatomic site of the body examined or affected	Laterality type relative to the anatomic site of the body examined or affected	Right/Left	Bilateral;Left;Right;Unknown;Midline	Bilateral;Left;Right;Unknown;Midline	Alphanumeric	Document the location (anatomic site and side) of each fracture	No references available	Adult;Pediatric	Supplemental	3.00	2013-08-28 16:08:00.453	International SCI Musculoskeletal Basic Data Set	The International SCI Data Sets	The International SCI Data Sets		Single Pre-Defined Value Selected
C06449	Heterotopic ossification detection method type	HetrotpcOssfctnDetctnMethdTyp	Type of method used to document the heterotopic ossification	Type of method used to document the heterotopic ossification	Method used to document heterotopic ossification, if present	X-ray;CT-scan;Triple phase bone scan;Other, specify	X-ray;CT-scan;Triple phase bone scan;Other method	Alphanumeric	Indicate the method used to confirm the presence of heterotopic ossification	No references available	Adult	Supplemental	3.00	2013-07-17 09:26:36.973	International SCI Musculoskeletal Basic Data Set	The International SCI Data Sets	The International SCI Data Sets		Multiple Pre-Defined Values Selected
C19247	Subject ID	SubIDNam	Subject identification ID	Subject identification ID	Subject			Alphanumeric	The participant or subject identifiers or IDs should be assigned by the study.	No references available	Adult;Pediatric	Supplemental	1.00	2014-06-05 13:10:49.0	International SCI Musculoskeletal Basic Data Set	The International SCI Data Sets	The International SCI Data Sets	255	Free-Form Entry
C05106	Surgical therapeutic procedure start date and time	SurgTherapuProcStartDateTime	Date (and time, if applicable and known) on which the surgical or therapeutic procedure started	Date (and time, if applicable and known) on which the surgical or therapeutic procedure started	Date of surgery			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.).	Brown JC, Swank SM, Matta J, Barras DM. Late spinal deformity in quadriplegic children. J Pediatric Orthopedics, 1984;4:456-461.	Adult;Pediatric	Supplemental	3.20	2022-08-18 17:27:56.0	International SCI Musculoskeletal Basic Data Set	The International SCI Data Sets	The International SCI Data Sets		Free-Form Entry
C06450	Neuromuscular scoliosis indicator	NeuromusclrSclsisInd	Indicator of any appreciable observable lateral deviation in the normally straight vertical line of the spine due to the sequelae of spinal cord injury (SCI)	Indicator of any appreciable observable lateral deviation in the normally straight vertical line of the spine due to the sequelae of spinal cord injury (SCI)	Scoliosis	Yes;No;Unknown	Yes;No;Unknown	Alphanumeric	Choose one	Brown JC, Swank SM, Matta J, Barras DM. Late spinal deformity in quadriplegic children. J Pediatric Orthopedics, 1984;4:456-461.	Adult	Supplemental	3.00	2013-07-17 09:26:36.973	International SCI Musculoskeletal Basic Data Set	The International SCI Data Sets	The International SCI Data Sets		Single Pre-Defined Value Selected
C06000	Site identifier number	SiteIDNum	Unique identification number given to the study site to distinguish the location where data is recorded	Unique identification number given to the study site to distinguish the location where data is recorde	Site			Alphanumeric	The site identifiers or IDs should be assigned by the study.	No references available	Adult	Supplemental	3.00	2013-07-17 09:26:36.973	International SCI Musculoskeletal Basic Data Set	The International SCI Data Sets	The International SCI Data Sets	255	Free-Form Entry
C06451	Neuromuscular scoliosis assessment method type	NeromusclrSclsisAssmntMethdTyp	Type of method(s) used to determine the presence of neuromuscular scoliosis	Type of method(s) used to determine the presence of neuromuscular scoliosi	If scoliosis present, method of assessment	Observation in sitting;Observation in standing;Plain radiographs in sitting;Plain radiographs in standing	Observation in sitting;Observation in standing;Plain radiographs in sitting;Plain radiographs in standing	Alphanumeric	Check all that apply	O'Brien MF. (2005). Spinal Deformity Study Group Radiographic Measurement Manual Medtronic Sofamor Danek USA, Inc.	Adult	Supplemental	3.00	2013-07-17 09:26:36.973	International SCI Musculoskeletal Basic Data Set	The International SCI Data Sets	The International SCI Data Sets		Multiple Pre-Defined Values Selected
C06005	Data collected date and time	DataCollDateTime	Date (and time, if applicable and known) the data were collected. This may be the date/time a particular examination or procedure was performed	Date (and time, if applicable and known) the data were collected. This may be the date/time a particular examination or procedure was performe	Date performed			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	3.00	2013-07-24 21:00:23.88	International SCI Musculoskeletal Basic Data Set	The International SCI Data Sets	The International SCI Data Sets		Free-Form Entry
C06452	Neuromuscular scoliosis surgery treat indicator	NeuromusclrSclsisSurgTrtInd	Indicator of whether the scoliosis has been surgical treated	Indicator of whether the scoliosis has been surgical treate	Surgically treated?	Yes;No;Unknown	Yes;No;Unknown	Alphanumeric	Choose one	Brown JC, Swank SM, Matta J, Barras DM. Late spinal deformity in quadriplegic children. J Pediatric Orthopedics, 1984;4:456-461.	Adult;Pediatric	Supplemental	3.00	2013-07-17 09:26:36.973	International SCI Musculoskeletal Basic Data Set	The International SCI Data Sets	The International SCI Data Sets		Single Pre-Defined Value Selected
C06432	Neuro-Musculoskeletal history before spinal cord lesion type	NeurmsckltlHstBfrSpnlCrdLsnTyp	Type of neuro-musculoskeletal history before spinal cord lesion	Type of neuro-musculoskeletal history before spinal cord lesion		Pre-existing congenital deformities of the spine and spinal cord;Pre-existing degenerative spine disorders;Pre-existing systemic neuro-degenerative disorders	Pre-existing congenital deformities of the spine and spinal cord;Pre-existing degenerative spine disorders;Pre-existing systemic neuro-degenerative disorders	Alphanumeric		No references available	Adult	Supplemental	3.00	2013-07-17 09:26:36.973	International SCI Musculoskeletal Basic Data Set	The International SCI Data Sets	The International SCI Data Sets		Multiple Pre-Defined Values Selected
C06454	Musculoskeletal other problem text	MusclskltlOthrProbTxt	Text describing the presence of any other musculoskeletal problems not described elsewhere	Text describing the presence of any other musculoskeletal problems not described elsewher	Other musculoskeletal problems; specify			Alphanumeric	Specify any other type of musculoskeletal problem not captured in the other variables. This could among other issues include gibbus formation in relation to Pott's paraplegia.	Benzagmout M, Boujraf S, Chakour K, Chaoui Mel F. Pott's disease in children. Surg Neurol Int. 2011 Jan 11;2:1. Moon MS, Moon JL, Moon YW, Kim SS, Kim SS, Sun DH, Choi WT. Pott's paraplegia in patients with severely deformed dorsal or dorsolumbar spines: treatment and prognosis. Spinal Cord. 2003 Mar;41(3):164-71.	Adult	Supplemental	3.00	2013-07-17 09:26:36.973	International SCI Musculoskeletal Basic Data Set	The International SCI Data Sets	The International SCI Data Sets	255	Free-Form Entry
C06435	Neuro-Musculoskeletal condition type	NeuroMuscskltlCondTyp	Type of neuro-musculoskeletal condition experienced or diagnosed	Type of neuro-musculoskeletal condition experienced or diagnosed	Fractures, heterotopic ossifications, contractures, or degenerative changes/overuse	Fracture;Heterotopic ossification;Contracture;Degenerative change/overuse	Fracture;Heterotopic ossification;Contracture;Degenerative change/overuse	Alphanumeric	Identifies whether the anatomic site and laterality type describes the fracture, heterotopic ossification, contracture, or degenerative change/overuse	No references available	Adult	Supplemental	3.00	2013-07-17 09:26:36.973	International SCI Musculoskeletal Basic Data Set	The International SCI Data Sets	The International SCI Data Sets		Single Pre-Defined Value Selected
C06455	Musculoskeletal challenge interfere activity scale	MsclskltlChllngIntrfrActvtyScl	Scale for how the musculoskeletal challenges interfere with the participant's daily activities of daily livings including transfers, walking, dressing, and showers	Scale for how the musculoskeletal challenges interfere with the participant's daily activities of daily livings including transfers, walking, dressing, and shower	Do any of the above musculoskeletal challenges interfere with your activities of daily living (transfers, walking, dressing, showers, etc.)?	Yes, a little;Yes, a lot;No, not at all	Yes, a little;Yes, a lot;No, not at all	Alphanumeric	This element requires the assessor to directly ask the individual with spinal cord lesion the following question "Does any of the musculoskeletal challenges above interfere with your activities of daily living (transfers, walking, dressing, showers, etc.)?"	Lechner HE, Frotzler A, Eser P. Relationship between self- and clinically rated spasticity in spinal cord injury. Arch Phys Med Rehabil. 2006 Jan;87(1):15-9. Vogel LC, Betz RR, Mulcahey MJ: Pediatric Spinal Cord Disorders in Children and Adolescents. In: Lin V, ed. Spinal Cord Medicine Textbook. Demos, New York, New York, 2003, 851-884. Lubicky J, Betz R. Spinal deformity in children and adolescents with spinal cord injury. In: Betz RR & Mulcahey MJ: (Eds) The Child with Spinal Cord injury. American Academy of Orthopedic Surgeons: Rosemont, IL, Chapter 32, pp363-370, 1996.	Adult	Supplemental	3.00	2013-07-17 09:26:36.973	International SCI Musculoskeletal Basic Data Set	The International SCI Data Sets	The International SCI Data Sets		Single Pre-Defined Value Selected
C06436	Neuro-Musculoskeletal condition anatomic site	NeuroMuscskltlCondAntmicSite	Anatomic site of the neuro-musculoskeletal condition experienced or diagnosed	Anatomic site of the neuro-musculoskeletal condition experienced or diagnosed	Location	Neck/Cervical spine;Shoulder/Humerus;Elbow;Forearm;Wrist;Hand;Upper back/Thoracic spine;Lower back/Lumbar spine;Pelvis;Hip/Femur;Knee;Tibia/Fibula;Ankle;Foot	Neck/Cervical spine;Shoulder/Humerus;Elbow;Forearm;Wrist;Hand;Upper back/Thoracic spine;Lower back/Lumbar spine;Pelvis;Hip/Femur;Knee;Tibia/Fibula;Ankle;Foot	Alphanumeric	Choose one for each neuro-musculoskeletal condition (fracture, heterotopic ossification, contracture, or degenerative change/overuse)	Fergusson D, Hutton B and Drodge A. The epidemiology of major joint contractures: A systematic review of the literature. Clinical Orthopaedics and Related Research. 2006;14:22-29. Apple, D, Cody, R, Allen, A. Overuse Syndrome of the Upper Limb in People With Spinal Cord Injury. In: Apple, DF, Editor, Physical Fitness: A guide for individuals with spinal cord injury. Journal of Rehabilitation Research and Development, Chapter 5, 1996 (Clinical Supplement): 97-108	Adult	Supplemental	3.00	2013-07-17 09:26:36.973	International SCI Musculoskeletal Basic Data Set	The International SCI Data Sets	The International SCI Data Sets		Single Pre-Defined Value Selected
C18174	Pre-exist diagnosis location text	PrexstDiagnsisLoctnTxt	Text describing the diagnosis and location of the pre-existing neuro-musculoskeletal history of either the spin and spinal cord, degenerative spine disorders, or systemic neuro-degenerative disorders	Text describing the diagnosis and location of the pre-existing neuro-musculoskeletal history of either the spin and spinal cord, degenerative spine disorders, or systemic neuro-degenerative disorder	If yes, specify Diagnosis and Location			Alphanumeric		No references available	Adult;Pediatric	Supplemental	3.00	2013-07-17 09:26:36.973	International SCI Musculoskeletal Basic Data Set	The International SCI Data Sets	The International SCI Data Sets	255	Free-Form Entry
C06439	Fracture date	FractrDate	Date (and time, if applicable and known) the fracture occurred at each site	Date (and time, if applicable and known) the fracture occurred at each site	Date of fracture			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	Supplemental	3.00	2013-07-17 09:26:36.973	International SCI Musculoskeletal Basic Data Set	The International SCI Data Sets	The International SCI Data Sets		Free-Form Entry
C18798	Heterotopic ossification detection method other text	HetrotpcOssfctnDetctnMethdOTH	The free-text field related to 'Heterotopic ossification detection method type' specifying other text. Type of method used to document the heterotopic ossification	The free-text field related to 'Heterotopic ossification detection method type' specifying other text. Type of method used to document the heterotopic ossification	Other, specify			Alphanumeric	Indicate the method used to confirm the presence of heterotopic ossification	No references available	Adult	Supplemental	3.00	2013-07-17 09:26:36.973	International SCI Musculoskeletal Basic Data Set	The International SCI Data Sets	The International SCI Data Sets	4000	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				Alphanumeric	Code each of the pre-existing neuro-musculoskeletal conditions and/or surgeries 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	International SCI Musculoskeletal Basic Data Set	The International SCI Data Sets	The International SCI Data Sets	255	Free-Form Entry
C06440	Fragility fracture indicator	FragltyFractrInd	Indicator of whether the fracture is a fragility fracture. Fragility fractures result from low force injuries insufficient to fracture normal bone	Indicator of whether the fracture is a fragility fracture. Fragility fractures result from low force injuries insufficient to fracture normal bone		Yes;No;Unknown	Yes;No;Unknown	Alphanumeric	Choose one	Jiang SD, Dai LY, Jiang LS. Osteoporosis after spinal cord injury. Osteoporos Int 2006; 17: 180-192. Craven BC, Robertson LA, McGillivray CF, Adachi JD. Detection and Treatment of Sublesional Osteoporosis Among Patients with Chronic Spinal Cord Injury: Proposed Paradigms. Topics in Spinal Cord Rehabilitation 2009; 14(4):1-22.	Adult	Supplemental	3.00	2013-07-17 09:26:36.973	International SCI Musculoskeletal Basic Data Set	The International SCI Data Sets	The International SCI Data Sets		Single Pre-Defined Value Selected
C19202	Pre spinal cord lesion neuro-musculoskeletal history type	PreSpnlCrdLsnNroMscSkelHistTyp	Type of neuro-musculoskeletal history prior to spinal cord lesion	Type of neuro-musculoskeletal history prior to spinal cord lesion	Neuro-musculoskeletal history before spinal cord lesion	None;Pre-existing congenital deformities of the spine and spinal cord;Pre-existing degenerative spine disorders;Pre-existing systemic neuro-degenerative disorders	None;Pre-existing congenital deformities of the spine and spinal cord;Pre-existing degenerative spine disorders;Pre-existing systemic neuro-degenerative disorders	Alphanumeric			Adult;Pediatric	Supplemental	1.00	2014-06-03 11:51:17.0	International SCI Musculoskeletal Basic Data Set	The International SCI Data Sets	The International SCI Data Sets		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				Date or Date & Time	Document the date of the surgery related to the pre-existing neuro-musculoskeletal condition. 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	International SCI Musculoskeletal Basic Data Set	The International SCI Data Sets	The International SCI Data Sets		Free-Form Entry	2543596
C06447	Spasticity spasm indicator	SpasctySpsmInd	Indicator of the presence of spasticity/spasms	Indicator of the presence of spasticity/spasms	Presence of spasticity/spasms	Yes;No;Unknown	Yes;No;Unknown	Alphanumeric	The presence of spasticity / spasms in the upper and lower extremities is captured using the modified Ashworth scale (MAS), i.e. greater than 1 on the MAS, or observation of spasms.	Bohannon RW, Smith MB. Interrater reliability of a Modified Ashworth Scale of muscle spasticity. Physical Therapy. 1987:67:206-7.	Adult	Supplemental	3.00	2013-07-17 09:26:36.973	International SCI Musculoskeletal Basic Data Set	The International SCI Data Sets	The International SCI Data Sets		Single Pre-Defined Value Selected
C19203	Pre-existing congenital deformity specify diagnosis name	CongentlDeformSpecifyDiagName	Specifies name of pre-existing congenital deformity of the spine and spinal cord	Specifies name of pre-existing congenital deformity of the spine and spinal cord	If yes, specify diagnosis and location			Alphanumeric			Adult;Pediatric	Supplemental	1.00	2014-06-03 14:52:14.0	International SCI Musculoskeletal Basic Data Set	The International SCI Data Sets	The International SCI Data Sets	4000	Free-Form Entry
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	If previous surgery due to this, description			Alphanumeric	Document the specific diagnosis for each pre-existing neuro-musculoskeletal condition and document the location/anatomic site if not obvious. Previous surgeries due to any of the conditions should also be documented with this element. Record each condition or surgery on separate lines.	No references available	Adult;Pediatric	Core	3.00	2013-07-25 08:54:08.2	International SCI Musculoskeletal Basic Data Set	The International SCI Data Sets	The International SCI Data Sets	4000	Free-Form Entry	2003874
C06448	Spasticity spasm treat last four week indicator	SpasctySpsmTrtLst4WkInd	Indicator of whether the person with SCI has received any kind of treatment for spasticity/spasms within the last four weeks	Indicator of whether the person with SCI has received any kind of treatment for spasticity/spasms within the last four week	Treatment for spasticity/spasms within the last four weeks?	Yes;No;Unknown	Yes;No;Unknown	Alphanumeric	YES should be indicated if any kind of treatment has been used for spasticity over the last four weeks regardless of whether it was or was not prescribed.	No references available	Adult	Supplemental	3.00	2013-07-17 09:26:36.973	International SCI Musculoskeletal Basic Data Set	The International SCI Data Sets	The International SCI Data Sets		Single Pre-Defined Value Selected