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CDE Detailed Report
This report contains detailed information about the selected CDEs.
Note: If at least one CDE was selected from a copyright- or trademark-protected instrument/scale then all of the CDEs from that instrument/scale are included in this report.
Disease: Spinal Cord Injury
SubDisease: Spinal Cord Injury
Sub-Domain: The International SCI Data Sets
CRF: International SCI Bowel Function Basic Data Set Version 2.0
Item count: 31 (31 distinct CDEs)
CDE ID
CDE Name
Variable Name
Definition / Description
Question Text
Permissible Value
Description
Data Type
Instructions
References
Population
Classification (e.g., Core)
Version #
Version Date
Aliases for Variable Name
CRF Module / Guideline
© or TM
Sub-Domain
Domain
Previous Title
Size
Input Restrictions
Min Value
Max Value
Measurement Type
LOINC ID
SNOMED
caDSR ID
CDISC ID
C06000
Site identifier number
SiteIDNum
Unique identification number given to the study site to distinguish the location where data is recorded.
Site
  
Alphanumeric
The site identifiers or IDs should be assigned by the study.
Krogh K, Perkash I, Stiens SA, Biering-Sørensen F. International bowel function basic spinal cord injury data set. Spinal Cord. 2009 Mar;47(3):230-4
Adult;Pediatric
Supplemental
3.0
7/17/2013
SITE
International SCI Bowel Function Basic Data Set Version 2.0
The International SCI Data Sets
The International SCI Data Sets
Site identifier
255
Free-Form Entry
       
C19247
Subject ID
SubIDNam
Subject identification ID
Subject
  
Alphanumeric
The participant or subject identifiers or IDs should be assigned by the study.
Krogh K, Perkash I, Stiens SA, Biering-Sørensen F. International bowel function basic spinal cord injury data set. Spinal Cord. 2009 Mar;47(3):230-4
Adult;Pediatric
Supplemental
1.0
6/5/2014
Aliases for variable name not defined
International SCI Bowel Function Basic Data Set Version 2.0
The International SCI Data Sets
The International SCI Data Sets
 
255
Free-Form Entry
       
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 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.).
Krogh K, Perkash I, Stiens SA, Biering-Sørensen F. International bowel function basic spinal cord injury data set. Spinal Cord. 2009 Mar;47(3):230-4
Adult;Pediatric
Supplemental
3.0
7/24/2013
Aliases for variable name not defined
International SCI Bowel Function Basic Data Set Version 2.0
The International SCI Data Sets
The International SCI Data Sets
Data collected date and time
 
Free-Form Entry
       
C06173
Gastrointestinal anal sphincter dysfunction unrelate SCI indicator
GasAnlSphDysfncUnrelSClInd
Indicator of any gastrointestinal or anal sphincter dysfunction unrelated to SCI. This is gastrointestinal or anal sphincter dysfunction concomitant and thus unrelated to changes in bowel function due to SCI.
Gastrointestinal or anal sphincter dysfunction unrelated to the spinal cord lesion
Yes, specify;No;Unknown;
Yes, specify;No;Unknown;
Alphanumeric
Choose one
Jones R, Lydeard S. Irritable bowel syndrome in the general population. Br Med J 1992; 304: 87-90.
Krogh K, Perkash I, Stiens SA, Biering-Sørensen F. International bowel function basic spinal cord injury data set. Spinal Cord. 2009 Mar;47(3):230-4
Adult;Pediatric
Supplemental
3.0
7/17/2013
GIFXNUN
International SCI Bowel Function Basic Data Set Version 2.0
The International SCI Data Sets
The International SCI Data Sets
Gastrointestinal or anal sphincter dysfunction unrelated to SCI indicator
 
Single Pre-Defined Value Selected
       
C18785
Gastrointestinal anal sphincter dysfunction unrelate SCI specify text
GasAnlSphDysfncUnrelSClST
The free-text field related to 'Gastrointestinal anal sphincter dysfunction unrelate SCI indicator'. Gastrointestinal or anal sphincter dysfunction concomitant and thus unrelated to changes in bowel function due to SCI.
Yes, specify
  
Alphanumeric
No instructions available
Jones R, Lydeard S. Irritable bowel syndrome in the general population. Br Med J 1992; 304: 87-90.
Krogh K, Perkash I, Stiens SA, Biering-Sørensen F. International bowel function basic spinal cord injury data set. Spinal Cord. 2009 Mar;47(3):230-4
Adult;Pediatric
Supplemental
3.0
7/17/2013
Aliases for variable name not defined
International SCI Bowel Function Basic Data Set Version 2.0
The International SCI Data Sets
The International SCI Data Sets
 
255
Free-Form Entry
       
C06025
Surgical or therapeutic procedure performed indicator
SurgTherProcedurPerfInd
Indicator whether the participant/subject has undergone the selected surgical procedure
Surgical procedures on the gastrointestinal tract
Yes;No;Unknown;
Yes;No;Unknown;
Alphanumeric
For each type of surgical procedure on the gastrointestinal tract indicate if it was ever performed
Krogh K, Perkash I, Stiens SA, Biering-Sørensen F. International bowel function basic spinal cord injury data set. Spinal Cord. 2009 Mar;47(3):230-4
Adult;Pediatric
Supplemental
3.0
7/25/2013
Refer to SCI CDE Annotated Form
International SCI Bowel Function Basic Data Set Version 2.0
The International SCI Data Sets
The International SCI Data Sets
Surgical or therapeutic procedure type performed indicator
 
Single Pre-Defined Value Selected
       
C05108
Surgical or therapeutic procedure type
SurgTherapProcedurTyp
Type of surgical or therapeutic procedure received by the participant/subject
Surgical procedures on the gastrointestinal tract
Appendicectomy;Cholecystectomy;Colostomy;Ileostomy;Feeding tube placement;Fundoplication;Scoliosis surgery;Tendon release;Tympanostomy tubes;Tracheostomy;Airway surgery;Other surgery, specify;Unknown;Diagnostic;Anterior temporal lobectomy (ATL);Anterior temporal lobectomy plus (ATL+);Amygdalohippocampectomy;Lesionectomy;Lesionectomy plus (Lesionectomy +);Extratemporal resection (Topectomy);Multi-lobar resection;Hemispherectomy;Vagus nerve stimulation (VNS) surgery;Corpus callosotomy;Multiple subpial transaction;Radiosurgery;Therapeutic brain stimulation;Other, specify;Appendicostomy;Appendectomy;Neurological surgery;Bony orthopedic surgery;
Appendicectomy;Cholecystectomy;Colostomy;Ileostomy;Feeding tube placement;Fundoplication;Scoliosis surgery;Tendon release;Tympanostomy tubes;Tracheostomy;Airway surgery;Other surgery, specify;Unknown;Diagnostic surgery;Anterior temporal lobectomy (ATL);Anterior temporal lobectomy plus (ATL+);Amygdalohippocampectomy;Lesionectomy;Lesionectomy plus (Lesionectomy +);Extratemporal resection (Topectomy);Multi-lobar resection;Hemispherectomy;Vagus nerve stimulation (VNS) surgery;Corpus callosotomy;Multiple subpial transaction;Radiosurgery;Therapeutic brain stimulation;Other, specify;Appendicostomy (antegrade colonic anema);Appendectomy;Neurological surgery;Bony orthopedic surgery;
Alphanumeric
For each type of surgical procedure on the gastrointestinal tract indicate if it was performed
Krogh K, Perkash I, Stiens SA, Biering-Sørensen F. International bowel function basic spinal cord injury data set. Spinal Cord. 2009 Mar;47(3):230-4
Adult;Pediatric
Supplemental
3.0
7/25/2013
Refer to SCI CDE Annotated Form
International SCI Bowel Function Basic Data Set Version 2.0
The International SCI Data Sets
The International SCI Data Sets
Surgical or therapeutic procedure type
 
Multiple Pre-Defined Values Selected
       
C21668
ICD-10-CM code
SurgTherapuProcICD10CMCode
Code from the International Classification of Diseases, Ninth Revision, Clinical Modification (ICD-10-CM) for the selected surgical procedure
Surgical procedures on the gastrointestinal tract
MB;C;T;S;G;Other, specify;
Muscle biopsy;Contracture Release;Tracheostomy;Scoliosis;Gastrostomy;Other specify;
Alphanumeric
If the data will be shared, code the surgical procedure using ICD-10-CM
http://www.cdc.gov/nchs/icd/icd10cm.htm#icd2016
Adult;Pediatric
Supplemental
1.0
8/28/2013
Aliases for variable name not defined
International SCI Bowel Function Basic Data Set Version 2.0
The International SCI Data Sets
The International SCI Data Sets
  
Multiple Pre-Defined Values Selected
       
C18765
Surgical or therapeutic procedure other text
SurgTherapProcedurOTH
The free-text field related to 'Surgical or therapeutic procedure type' specifying other text. Type of surgical or therapeutic procedure received by the participant/subject
Other, specify
  
Alphanumeric
For each type of surgical procedure on the gastrointestinal tract indicate if it was performed
Krogh K, Perkash I, Stiens SA, Biering-Sørensen F. International bowel function basic spinal cord injury data set. Spinal Cord. 2009 Mar;47(3):230-4
Adult;Pediatric
Supplemental
1.0
5/27/2014
Aliases for variable name not defined
International SCI Bowel Function Basic Data Set Version 2.0
The International SCI Data Sets
The International SCI Data Sets
 
4000
Free-Form Entry
       
C21669
Surgical or therapeutic procedure ICD-10-CM other text
SurgTherapuProcICD10CMOTH
The free-text field related to 'Surgical or therapeutic procedure ICD-10-CM code' specifying other text. Code from the International Classification of Diseases, Tenth Revision, Clinical Modification (ICD-10-CM) for the selected surgical procedure
Other, specify
  
Alphanumeric
If the data will be shared, code the surgical procedure using ICD-10-CM
International Classification of Diseases, Tenth Revision, Clinical Modification (ICD-10-CM) for permissible values: http://www.cdc.gov/nchs/icd/icd10cm.htm#icd2016
Adult;Pediatric
Supplemental
1.0
5/27/2014
Aliases for variable name not defined
International SCI Bowel Function Basic Data Set Version 2.0
The International SCI Data Sets
The International SCI Data Sets
 
4000
Free-Form Entry
       
C06187
Defecation method bowel care procedure used past four week main type
DefctnMthdBwlProcedUseMainTyp
Type of main defecation method and bowel care procedures used within the last four weeks.
Main
Normal defecation;Straining/bearing down to empty;Digital ano-rectal stimulation;Suppositories;Digital evacuation;Mini enema;Enema;Colostomy;Sacral anterior root stimulation;Other, specify;Unknown;
Normal defecation;Straining/bearing down to empty;Digital ano-rectal stimulation;Suppositories;Digital evacuation;Mini enema (Clysma = 150 mL);Enema (> 150 mL);Colostomy;Sacral anterior root stimulation;Other method, specify;Unknown;
Alphanumeric
Choose one main method
Krogh K, Perkash I, Stiens SA, Biering-Sørensen F. International bowel function basic spinal cord injury data set. Spinal Cord. 2009 Mar;47(3):230-4
Adult;Pediatric
Supplemental
3.0
7/17/2013
DEFMTHM
International SCI Bowel Function Basic Data Set Version 2.0
The International SCI Data Sets
The International SCI Data Sets
Defecation method or bowel care procedure used past four weeks main type
 
Single Pre-Defined Value Selected
       
C18786
Defecation method bowel care procedure used past four week main other text
DefctnMthdBwlProcedUseMainOTH
The free-text field related to 'Defecation method bowel care procedure used past four week main type' specifying other text. Type of main defecation method and bowel care procedures used within the last four weeks.
Other method, specify
  
Alphanumeric
No instructions available
Krogh K, Perkash I, Stiens SA, Biering-Sørensen F. International bowel function basic spinal cord injury data set. Spinal Cord. 2009 Mar;47(3):230-4
Adult;Pediatric
Supplemental
3.0
7/17/2013
Aliases for variable name not defined
International SCI Bowel Function Basic Data Set Version 2.0
The International SCI Data Sets
The International SCI Data Sets
 
4000
Free-Form Entry
       
C06188
Defecation method bowel care procedure used past four week supplementary type
DefctnMthdBwlProcedUseSuppTyp
Type or types of supplemental defecation methods and bowel care procedures used within the last four weeks. Supplementary methods should be performed at least once every week.
Supplementary
Sacral anterior root stimulation;Other, specify;Unknown;Enema;Mini enema;Not applicable;Normal defecation;Straining/bearing down to empty;Digital ano-rectal stimulation;Suppositories;Digital evacuation;
Sacral anterior root stimulation;Other method, specify;Unknown;Enema (> 150 mL);Mini enema (Clysma = 150 mL);Not applicable;Normal defecation;Straining/bearing down to empty;Digital ano-rectal stimulation;Suppositories;Digital evacuation;
Alphanumeric
Choose all that apply as more than one supplementary method can be used
Krogh K, Perkash I, Stiens SA, Biering-Sørensen F. International bowel function basic spinal cord injury data set. Spinal Cord. 2009 Mar;47(3):230-4
Adult;Pediatric
Supplemental
3.0
7/17/2013
Refer to SCI CDE Annotated Form
International SCI Bowel Function Basic Data Set Version 2.0
The International SCI Data Sets
The International SCI Data Sets
Defecation method or bowel care procedure used past four weeks supplementary type
 
Multiple Pre-Defined Values Selected
       
C18787
Defecation method bowel care procedure used past four week supplementary other text
DefctnMthdBwlProcedUseSuppOTH
The free-text field related to 'Defecation method bowel care procedure used past four week supplementary type' specifying other text. Type or types of supplemental defecation methods and bowel care procedures used within the last four weeks. Supplementary methods should be performed at least once every week.
Other, specify
  
Alphanumeric
No instructions available
Krogh K, Perkash I, Stiens SA, Biering-Sørensen F. International bowel function basic spinal cord injury data set. Spinal Cord. 2009 Mar;47(3):230-4
Adult;Pediatric
Supplemental
3.0
7/17/2013
Refer to SCI CDE Annotated Form
International SCI Bowel Function Basic Data Set Version 2.0
The International SCI Data Sets
The International SCI Data Sets
 
4000
Free-Form Entry
       
C06190
Defecation past four week average duration range
DefctnPstFourWkAvgDurRang
Range for the average time required for each defecation within the last four weeks. The time given is from first transferring to the toilet or commode until end of defecation and transfer to wheel chair or moving from the toilet. If bladder emptying, body washing, shaving etc is also performed while sitting at the toilet time for this is subtracted. For individuals performing bowel management while lying in the bed time required is from beginning to end of bowel management not including time for bladder management, body washing etc.
Average time required for defecation within the last four weeks
0-30 minutes;31-60 minutes;More than 60 minutes;Not applicable;Unknown;
0-30 minutes;31-60 minutes;More than 60 minutes;Not applicable;Unknown;
Alphanumeric
Choose one. Included in calculating total NBD score.
Krogh K, Perkash I, Stiens SA, Biering-Sørensen F. International bowel function basic spinal cord injury data set. Spinal Cord. 2009 Mar;47(3):230-4 Krogh K, Christensen P, Sabroe S, Laurberg S. Neurogenic bowel dysfunction score. Spinal Cord 2006; 44: 62
Adult;Pediatric
Supplemental
3.0
7/17/2013
AVDEFTM
International SCI Bowel Function Basic Data Set Version 2.0
The International SCI Data Sets
The International SCI Data Sets
Defecation past four weeks average duration range
 
Single Pre-Defined Value Selected
       
C06191
Defecation past four week average frequency
DefctnPstFourWkAvgDurFreq
Average frequency of defecation within the last four weeks.
Frequency of defecation within the last four weeks
Daily;2-6 times per week;Once every week or less;Unknown;
Daily;2-6 times per week;Once every week or less;Unknown;
Alphanumeric
Choose one. This element does not distinguish between spontaneous or assisted defecation. Not applicable can be used i.e. in subjects with ileo- or colostomy. Included in calculating total NBD score.
Drossman DA, Sandler RS, McKee DC, Lovitz AJ. Bowel patterns among subjects not seeking health care. Gastroenterology 1982; 83: 529-534. Krogh K, Christensen P, Sabroe S, Laurberg S. Neurogenic bowel dysfunction score. Spinal Cord 2006; 44: 625. Krogh K, Perkash I, Stiens SA, Biering-Sørensen F. International bowel function basic spinal cord injury data set. Spinal Cord. 2009 Mar;47(3):230-4.
Adult;Pediatric
Supplemental
3.0
7/17/2013
DEFFRQ
International SCI Bowel Function Basic Data Set Version 2.0
The International SCI Data Sets
The International SCI Data Sets
Defecation past four weeks average frequency
 
Single Pre-Defined Value Selected
       
C53029
Defecation uneasiness headache perspiration past four week indicator
DefctnUneasHeadaPersPstFrMoInd
The indicator related to uneasiness, headache or perspiration during defecation.
Uneasiness, headache or perspiration during defecation
Yes;No;Unknown;
Yes;No;Unknown;
Alphanumeric
within the last four weeks
Included in calculating total NBD score.
Krogh K, Perkash I, Stiens SA, Biering-Sørensen F. International bowel function basic spinal cord injury data set. Spinal Cord. 2009 Mar;47(3):230-4.
Adult;Pediatric
Supplemental
3.0
7/17/2013
Aliases for variable name not defined
International SCI Bowel Function Basic Data Set Version 2.0
The International SCI Data Sets
The International SCI Data Sets
  
Single Pre-Defined Value Selected
       
C53031
Digital rectal stimulation evacuation anorectum past four week average frequency
DgtlRecStimEvAnorPstFrWkAvFreq
The indicator related to digital rectal stimulation or evacuation of the anorectum
Digital stimulation or evacuation of the anorectum
Daily;Once or more per week;Less than once per week;Never;Unknown;
Daily;Once or more per week;Less than once per week;Never;Unknown;
Alphanumeric
within the last four weeks
Included in calculating total NBD score.
No references available
Adult;Pediatric
Supplemental
1.0
2/3/2017
Aliases for variable name not defined
International SCI Bowel Function Basic Data Set Version 2.0
The International SCI Data Sets
The International SCI Data Sets
  
Single Pre-Defined Value Selected
       
C53037
Fecal incontinence past four week average frequency
FclInctPstFourMoAveFreq
Average frequency of incontinence to solid or liquid stools within the last four weeks. Fecal incontinence is defined as involuntary passage of stools.
Frequency of fecal incontinence
Daily;1-6 times per week;1-4 times every month;Less than once per month;Never;Unknown;Not applicable;
Daily;1-6 times per week;1-4 times every month;Less than once per month;Never;Unknown;Not applicable;
Alphanumeric
within the last four weeks
Included in calculating total NBD score.
No references available
Adult;Pediatric
Supplemental
3.0
7/17/2013
Aliases for variable name not defined
International SCI Bowel Function Basic Data Set Version 2.0
The International SCI Data Sets
The International SCI Data Sets
  
Single Pre-Defined Value Selected
       
C53041
Flatus incontinence indicator
FltsIncntncInd
The indicator related to flatus incontinence within the last four weeks
Flatus incontinence
No;Yes;Not applicable;Unknown;
No;Yes;Not applicable;Unknown;
Alphanumeric
within the last four weeks
Included in calculating total NBD score.
No references available
Adult;Pediatric
Supplemental
3.0
7/17/2013
Aliases for variable name not defined
International SCI Bowel Function Basic Data Set Version 2.0
The International SCI Data Sets
The International SCI Data Sets
  
Single Pre-Defined Value Selected
       
C06193
Diaper pad plug use past four week indicator
DiapPadPlugPstFourWkInd
Indicator for need to wear a diaper, pad or plug within the last four weeks
Need to wear diaper, pad or plug
Yes;No;Unknown;
Yes;No;Unknown;
Alphanumeric
Within the last four weeks, choose one. The need to wear a pad only for urinary incontinence should not be included.
Krogh K, Perkash I, Stiens SA, Biering-Sørensen F. International bowel function basic spinal cord injury data set. Spinal Cord. 2009 Mar;47(3):230-4
Adult;Pediatric
Supplemental
3.0
7/17/2013
WRPADPLG
International SCI Bowel Function Basic Data Set Version 2.0
The International SCI Data Sets
The International SCI Data Sets
Pad or plug use past three months frequency
 
Single Pre-Defined Value Selected
       
C19188
Oral laxative medication indicator
OralLaxativeMedicationInd
Indicator for oral laxative medication use (within the last four weeks)
Oral laxatives
Yes;No;Unknown;
Yes;No;Unknown;
Alphanumeric
Within the last four weeks
Included in calculating total NBD score.
No references available
Adult;Pediatric
Supplemental
1.0
6/2/2014
Aliases for variable name not defined
International SCI Bowel Function Basic Data Set Version 2.0
The International SCI Data Sets
The International SCI Data Sets
  
Single Pre-Defined Value Selected
       
C06196
Oral laxative drops liquid type
OrlLaxDropsLiquidTyp
Type of drops or liquid oral laxative, a medicine taken by mouth to encourage bowel movements to relieve constipation taken within the last four weeks
Yes, drops or liquids
Bulking/osmotic;Irritant;
Bulking/osmotic;Irritant;
Alphanumeric
Used in calculating total NBD score
Krogh K, Perkash I, Stiens SA, Biering-Sørensen F. International bowel function basic spinal cord injury data set. Spinal Cord. 2009 Mar;47(3):230-4
Adult;Pediatric
Supplemental
3.0
7/17/2013
Refer to SCI CDE Annotated Form
International SCI Bowel Function Basic Data Set Version 2.0
The International SCI Data Sets
The International SCI Data Sets
Oral laxative type
 
Multiple Pre-Defined Values Selected
       
C53047
Oral laxative tablet capsule granulate type
OrlLaxTabCapsGrnlTyp
Type of tablets, capsules or granulate oral laxative, a medicine taken by mouth to encourage bowel movements to relieve constipation.
Yes, tablets, capsules or granulates
Bulking/osmotic;Irritant;Prokinetics/chloride channel activators;Other, specify;
Bulking/osmotic;Irritant;Prokinetics/chloride channel activators;Other, specify;
Alphanumeric
Used in calculating total NBD score
Krogh K, Perkash I, Stiens SA, Biering-Sørensen F. International bowel function basic spinal cord injury data set. Spinal Cord. 2009 Mar;47(3):230-4
Adult;Pediatric
Supplemental
3.0
7/17/2013
Refer to SCI CDE Annotated Form
International SCI Bowel Function Basic Data Set Version 2.0
The International SCI Data Sets
The International SCI Data Sets
  
Multiple Pre-Defined Values Selected
       
C19189
Oral laxative tablets capsules granulates other text
OralLaxTabCapGrnlOTH
The free-text field related to 'Oral laxative tablets capsules granulates type' specifying other text.
Other, specify
  
Alphanumeric
No instructions available
No references available
Adult;Pediatric
Supplemental
1.0
6/2/2014
Aliases for variable name not defined
International SCI Bowel Function Basic Data Set Version 2.0
The International SCI Data Sets
The International SCI Data Sets
 
4000
Free-Form Entry
       
12-16-2018
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