CDE Detailed Report

Disease: Spinal Cord Injury
Subdomain Name: The International SCI Data Sets
CRF: International SCI Lower Urinary Tract Function Basic Data Set

Displaying 1 - 26 of 26
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 External Id Loinc External Id Snomed External Id caDSR External Id CDISC
C06023 Urinary tract drug type UrinTractDrgTyp Type of drug, systemic or intravesical, for the urinary tract used Type of drug, systemic or intravesical, for the urinary tract used If yes, indicate type of drugs used for the urinary tract within the last year Antibiotics/antiseptics;Bladder relaxant drugs (anticholinergics, tricyclic antidepressants, etc.);Other,specify;Sphincter/bladder neck relaxant drugs (alpha adrenergic blockers, etc.) Antibiotics/antiseptics;Bladder relaxant drugs (anticholinergics, tricyclic antidepressants, etc.);Other, specify;Sphincter/bladder neck relaxant drugs (alpha adrenergic blockers, etc.) Alphanumeric

For each type of urinary tract drug indicate if it is used

Biering-SØrensen F, Craggs M, Kennelly M, Schick E, Wyndaele JJ. International Lower Urinary Tract Function Basic Spinal Cord Injury Data Set. Spinal Cord 2008 May;46(5):325-30. Adult Supplemental 3.00 2013-07-17 09:26:36.973 International SCI Lower Urinary Tract Function Basic Data Set The International SCI Data Sets The International SCI Data Sets

Multiple Pre-Defined Values Selected

C21669 Surgical therapeutic procedure ICD-10-CM other text SurgTherapuProcICD10CMOthTxt 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 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 1.00 2014-05-27 13:34:46.0 International SCI Lower Urinary Tract Function Basic Data Set The International SCI Data Sets The International SCI Data Sets 4000

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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.

Biering-SØrensen F, Craggs M, Kennelly M, Schick E, Wyndaele JJ. International Lower Urinary Tract Function Basic Spinal Cord Injury Data Set. Spinal Cord 2008 May;46(5):325-30. Adult Supplemental 3.00 2013-07-17 09:26:36.973 International SCI Lower Urinary Tract Function Basic Data Set The International SCI Data Sets The International SCI Data Sets 255

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C06025 Surgical or therapeutic procedure performed indicator SurgTherProcedurPerfInd Indicator whether the participant/subject has undergone the selected surgical procedure Indicator whether the participant/subject has undergone the selected surgical procedure Surgical procedures on the urinary 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 3.00 2013-07-25 08:54:08.2 International SCI Lower Urinary Tract Function Basic Data Set The International SCI Data Sets The International SCI Data Sets

Single Pre-Defined Value Selected

C21671 Urinary tract antibiotic antiseptic use reason UrnTrctAntibioAntisepURsn Reason antibiotics or antiseptics were used for the urinary tract Reason antibiotics or antiseptics were used for the urinary tract Antibiotic/antiseptic For prophylactic reasons;For treatment of urinary tract infection For prophylactic reasons;For treatment of urinary tract infection Alphanumeric Adult;Pediatric Supplemental 1.00 2016-04-27 10:17:02.0 International SCI Lower Urinary Tract Function Basic Data Set The International SCI Data Sets The International SCI Data Sets

Single Pre-Defined Value 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 of data collection 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.).

Biering-SØrensen F, Craggs M, Kennelly M, Schick E, Wyndaele JJ. International Lower Urinary Tract Function Basic Spinal Cord Injury Data Set. Spinal Cord 2008 May;46(5):325-30. Adult;Pediatric Supplemental 3.00 2013-07-24 21:00:23.88 International SCI Lower Urinary Tract Function Basic Data Set The International SCI Data Sets The International SCI Data Sets

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C06054 Urinary symptom change past year indicator UrinSympChngPstYrInd Indicator of whether there were any change in urinary symptoms within the last year Indicator of whether there were any change in urinary symptoms within the last year Any change in urinary symptoms within the last year No;Yes;Not applicable;Unknown No;Yes;Not applicable;Unknown Alphanumeric

Lower urinary tract symptoms are according to the International Continence Society the subjective indicator of a disease or change in conditions as perceived by the individual with spinal cord lesion, attendant or partner and may lead him/her to seek help from health care professionals (Abrams et al. 2002). Symptoms may either be volunteered or described during the data collection interview with the individual with spinal cord lesion. The information may be qualitative as well as quantitative, e.g. change in frequency, urgency, nocturia, incontinence, hesitancy, slow stream, etc. "Not applicable" is to be used when data reporting is performed within the first year after the spinal cord lesion.

Abrams P, Cardozo L, Fall M, Griffiths D, Rosier P, Ulmsten U, van Kerrebroeck P, Victor A, Wein A. The Standardization of Terminology of Lower Urinary Tract Function: Report from the Standardization Sub-committee of the International Continence Society. Biering-SØrensen F, Craggs M, Kennelly M, Schick E, Wyndaele JJ. International Lower Urinary Tract Function Basic Spinal Cord Injury Data Set. Spinal Cord 2008 May;46(5):325-30. Adult Supplemental 3.00 2013-07-17 09:26:36.973 International SCI Lower Urinary Tract Function Basic Data Set The International SCI Data Sets The International SCI Data Sets

Single Pre-Defined Value Selected

C22705 Urinary incontinence collect appliance indicator UrinInconColApplInd Indicator for collecting appliances for urinary incontinence. Collecting appliances are any externally applied aids to avoid urinary leakage, or devices for collection of urine Indicator for collecting appliances for urinary incontinence. Collecting appliances are any externally applied aids to avoid urinary leakage, or devices for collection of urin Collecting appliances for urinary incontinence No;Yes;Unknown No;Yes;Unknown Alphanumeric Adult;Pediatric Supplemental 3.00 2013-07-17 09:26:36.973 International SCI Lower Urinary Tract Function Basic Data Set The International SCI Data Sets The International SCI Data Sets

Multiple Pre-Defined Values Selected

C06012 Urinary tract impairment unrelate injury indicator UrinTractImpairUnrelInjInd Indicator of urinary tract impairment unrelated to spinal cord lesion Indicator of urinary tract impairment unrelated to spinal cord lesion Urinary tract impairment unrelated to spinal cord lesion No;Yes, specify;Unknown No;Yes, specify;Unknown Alphanumeric

Choose one. To be able to evaluate the lower urinary tract function in an individual with spinal cord lesion it is necessary to know if there are any other urinary tract impairments unrelated to the spinal cord lesion. If there have been any urinary tract impairments unrelated to the spinal cord lesion this/these is/are recommended to be written in a text-field, from which it will be possible to retrieve more detailed data when necessary. Because many possible urinary tract impairments exist, it is not practical to give an exact list of impairments. If this information has been documented once and no additional urinary tract impairments unrelated to the spinal cord lesion have been identified it is only necessary fill in this item once, to avoid redundant data.

Biering-SØrensen F, Craggs M, Kennelly M, Schick E, Wyndaele JJ. International Lower Urinary Tract Function Basic Spinal Cord Injury Data Set. Spinal Cord 2008 May;46(5):325-30. Adult Supplemental 3.00 2013-07-17 09:26:36.973 International SCI Lower Urinary Tract Function Basic Data Set The International SCI Data Sets The International SCI Data Sets

Single Pre-Defined Value Selected

C18120 Urinary tract impairment unrelate injury name UrinTractImpairUnrelInjurNam Name of indicator of urinary tract impairment unrelated to spinal cord lesion Name of indicator of urinary tract impairment unrelated to spinal cord lesio Yes, specify Alphanumeric No references available Adult;Pediatric Supplemental 3.00 2013-07-17 09:26:36.973 International SCI Lower Urinary Tract Function Basic Data Set The International SCI Data Sets The International SCI Data Sets 255

Free-Form Entry

C06014 Bladder empty need awareness indicator BladEmpNeedAwreInd Indicator of whether the participant is aware that he/she needs to empty his/her bladder Indicator of whether the participant is aware that he/she needs to empty his/her bladde Awareness of the need to empty the bladder No;Yes;Not applicable;Not known No;Yes;Not applicable;Not known Alphanumeric

Choose one. Awareness of the need to empty the bladder indicates any kind of bladder sensation as defined by International Continence Society (Abrams et al. 2002), i.e. normal (the individual is aware of bladder filling and increasing sensation up to a strong desire to void), increased (the individual feels an early and persistent desire to void), reduced (the individual is aware of bladder filling but does not feel a definite desire to void) or non-specific bladder sensation (the individual reports no specific bladder sensation, but may perceive bladder filling as abdominal fullness, vegetative symptoms like sweating or spasticity). No awareness of the need to empty the bladder should be noted as "no". Absent bladder sensation according to the definition of bladder sensation by the International Continence Society (the individual reports no sensation of bladder filling or desire to void) (Abrams et al. 2002) is not exactly the same as filling sensation and desire to void can be absent while temperature sensation or electrosensation can be present. "Not applicable" is to be used when the individual with spinal cord lesion has for example an unclamped indwelling catheter or non-continent urinary diversion.

Abrams P, Cardozo L, Fall M, Griffiths D, Rosier P, Ulmsten U, van Kerrebroeck P, Victor A, Wein A. The Standardisation of Terminology of Lower Urinary Tract Function: Report from the Standardisation Sub-committee of the International Continence Society. Neurourology and Urodynamics 2002:21;167-78. Biering-SØrensen F, Craggs M, Kennelly M, Schick E, Wyndaele JJ. International Lower Urinary Tract Function Basic Spinal Cord Injury Data Set. Spinal Cord 2008 May;46(5):325-30. Adult Supplemental 3.00 2013-07-17 09:26:36.973 International SCI Lower Urinary Tract Function Basic Data Set The International SCI Data Sets The International SCI Data Sets

Single Pre-Defined Value 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 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 urinary tract indicate if it was performed

Biering-SØrensen F, Craggs M, Kennelly M, Schick E, Wyndaele JJ. International Lower Urinary Tract Function Basic Spinal Cord Injury Data Set. Spinal Cord 2008 May;46(5):325-30. Adult;Pediatric Supplemental 1.00 2014-05-27 13:34:46.0 International SCI Lower Urinary Tract Function Basic Data Set The International SCI Data Sets The International SCI Data Sets 4000

Free-Form Entry

C06015 Bladder empty method main type BladEmpMethdMainTyp Main method of bladder emptying Main method of bladder emptyin Bladder emptying Bladder expression;Bladder reflex triggering;External compression bladder expression;Indwelling catheter;Intermittent catheterisation;Intermittent catheterisation by attendant;Intermittent self-catheterisation;Involuntary bladder reflex triggering;Non-continent urinary diversion/ostomy;Normal voiding;Other method, specify;Sacral anterior root stimulation;Straining bladder expression;Suprapubic;Suprapubic indwelling catheter;Transurethral indwelling catheter;Unknown;Voluntary bladder reflex triggering Comprises various manoeuvres aimed at increasing intravesical pressure in order to facilitate bladder emptying. The most commonly used manoeuvres are abdominal straining, Valsalva's manoeuvre and CredÉ manoeuvre (Abrams et al. 2002).;Comprises various manoeuvres performed by the individual with spinal cord lesion or an attendant in order to elicit reflex detrusor contraction by exteroceptive stimuli. The most commonly used manoeuvres are suprapubic tapping, thigh scratching and anal/rectal manipulation (Abrams et al. 2002).;Includes CredÉ manoeuvre.;An indwelling catheter remains in the bladder, urinary reservoir or urinary conduit for a period of time longer than one emptying (Abrams et al. 2002).;Is defined as drainage or aspiration of the bladder or urinary reservoir/continent urinary diversion with subsequent removal of the catheter.;Is performed by an attendant (e.g. family member or personal aid);Is performed by the individual with spinal cord lesion himself/herself;Implies that there is no voluntary triggering of the voiding, but the individual with spinal cord lesion just let the urine run by itself when the reflex detrusor contraction occur by itself.;Non-continent urinary diversion/ostomy;Voluntary initiation of micturition without reflex stimulation or compression of the bladder. This does not presume entirely normal function (Levi and Ertzgaard 1998).;Other method, specify;Sacral anterior root stimulation;Includes abdominal straining, Valsalva's manoeuvre.;Suprapubic;indicates, that the urine is drained through a catheter via the abdominal wall.;Indicates, that the urine is drained through a catheter placed in the urethra.;Unknown;Indicates that the bladder reflex is triggered by the spinal cord lesioned individual him/herself or by the attendant. Alphanumeric

For each method of bladder emptying, indicate whether this is a main or a supplementary method. Two main and more supplementary methods may be indicated (adopted from Levi and Ertzgaard 1998).

Abrams P, Cardozo L, Fall M, Griffiths D, Rosier P, Ulmsten U, van Kerrebroeck P, Victor A, Wein A. The Standardisation of Terminology of Lower Urinary Tract Function: Report from the Standardisation Sub-committee of the International Continence Society. Neurourology and Urodynamics 2002:21;167-78. Biering-SØrensen F, Craggs M, Kennelly M, Schick E, Wyndaele JJ. International Lower Urinary Tract Function Basic Spinal Cord Injury Data Set. Spinal Cord 2008 May;46(5):325-30. Levi R, Ertzgaard P, The Swedish Spinal Cord Injury Council 1998. Quality indicators in spinal cord injury care: A Swedish collaboration project. Scand J Rehabil Med 1998;Suppl.38:1-80. Adult Supplemental 3.00 2013-07-17 09:26:36.973 International SCI Lower Urinary Tract Function Basic Data Set The International SCI Data Sets The International SCI Data Sets

Single Pre-Defined Value Selected

C18779 Urinary tract impairment unrelate injury specify text UrinaryTractImpairUnrelInjST The free-text field related to 'Urinary tract impairment unrelate injury indicator'. Indicator of urinary tract impairment unrelated to spinal cord lesion The free-text field related to 'Urinary tract impairment unrelate injury indicator'. Indicator of urinary tract impairment unrelated to spinal cord lesio Yes, specify Alphanumeric

Choose one. To be able to evaluate the lower urinary tract function in an individual with spinal cord lesion it is necessary to know if there are any other urinary tract impairments unrelated to the spinal cord lesion. If there have been any urinary tract impairments unrelated to the spinal cord lesion this/these is/are recommended to be written in a text-field, from which it will be possible to retrieve more detailed data when necessary. Because many possible urinary tract impairments exist, it is not practical to give an exact list of impairments. If this information has been documented once and no additional urinary tract impairments unrelated to the spinal cord lesion have been identified it is only necessary fill in this item once, to avoid redundant data.

Biering-SØrensen F, Craggs M, Kennelly M, Schick E, Wyndaele JJ. International Lower Urinary Tract Function Basic Spinal Cord Injury Data Set. Spinal Cord 2008 May;46(5):325-30. Adult Supplemental 3.00 2013-07-17 09:26:36.973 International SCI Lower Urinary Tract Function Basic Data Set The International SCI Data Sets The International SCI Data Sets 4000

Free-Form Entry

C06017 Bladder empty method supplementary type BladEmpMethdSuppTyp Supplementary type(s) of bladder emptying method(s) Supplementary type(s) of bladder emptying method(s) Bladder emptying Bladder expression;Bladder reflex triggering;External compression bladder expression;Indwelling catheter;Intermittent catheterisation;Intermittent catheterisation by attendant;Intermittent self-catheterisation;Involuntary bladder reflex triggering;Non-continent urinary diversion/ostomy;Normal voiding;Other method, specify;Sacral anterior root stimulation;Straining bladder expression;Suprapubic;Suprapubic indwelling catheter;Transurethral indwelling catheter;Unknown;Voluntary bladder reflex triggering Comprises various manoeuvres aimed at increasing intravesical pressure in order to facilitate bladder emptying. The most commonly used manoeuvres are abdominal straining, Valsalva's manoeuvre and CredÉ manoeuvre (Abrams et al. 2002).;Comprises various manoeuvres performed by the individual with spinal cord lesion or an attendant in order to elicit reflex detrusor contraction by exteroceptive stimuli. The most commonly used manoeuvres are suprapubic tapping, thigh scratching and anal/rectal manipulation (Abrams et al. 2002).;Includes CredÉ manoeuvre.;An indwelling catheter remains in the bladder, urinary reservoir or urinary conduit for a period of time longer than one emptying (Abrams et al. 2002).;Is defined as drainage or aspiration of the bladder or urinary reservoir/continent urinary diversion with subsequent removal of the catheter.;Is performed by an attendant (e.g. family member or personal aid);Is performed by the individual with spinal cord lesion himself/herself;Implies that there is no voluntary triggering of the voiding, but the individual with spinal cord lesion just let the urine run by itself when the reflex detrusor contraction occur by itself.;Non-continent urinary diversion/ostomy;Voluntary initiation of micturition without reflex stimulation or compression of the bladder. This does not presume entirely normal function (Levi and Ertzgaard 1998).;Other method, specify;Sacral anterior root stimulation;Includes abdominal straining, Valsalva's manoeuvre.;Suprapubic;indicates, that the urine is drained through a catheter via the abdominal wall.;Indicates, that the urine is drained through a catheter placed in the urethra.;Unknown;Indicates that the bladder reflex is triggered by the spinal cord lesioned individual him/herself or by the attendant. Alphanumeric

For each method of bladder emptying, indicate whether this is a main or a supplementary method. Two main and more supplementary methods may be indicated (adopted from Levi and Ertzgaard 1998).

Abrams P, Cardozo L, Fall M, Griffiths D, Rosier P, Ulmsten U, van Kerrebroeck P, Victor A, Wein A. The Standardisation of Terminology of Lower Urinary Tract Function: Report from the Standardisation Sub-committee of the International Continence Society. Neurourology and Urodynamics 2002:21;167-78. Biering-SØrensen F, Craggs M, Kennelly M, Schick E, Wyndaele JJ. International Lower Urinary Tract Function Basic Spinal Cord Injury Data Set. Spinal Cord 2008 May;46(5):325-30. Levi R, Ertzgaard P, The Swedish Spinal Cord Injury Council 1998. Quality indicators in spinal cord injury care: A Swedish collaboration project. Scand J Rehabil Med 1998;Suppl.38:1-80. Adult Supplemental 3.00 2013-07-17 09:26:36.973 International SCI Lower Urinary Tract Function Basic Data Set The International SCI Data Sets The International SCI Data Sets

Single Pre-Defined Value Selected

C18780 Urinary incontinence collect appliance other text UrinInconColApplOTH The free-text field related to 'Urinary incontinence collect appliance type' specifying other text. Type or types of collecting appliances for urinary incontinence. Collecting appliances are any externally applied aids to avoid urinary leakage, or devices for collection of urine The free-text field related to 'Urinary incontinence collect appliance type' specifying other text. Type or types of collecting appliances for urinary incontinence. Collecting appliances are any externally applied aids to avoid urinary leakage, or devices for collection of urin Other, specify Alphanumeric

Regular use of one or more collecting appliances is to be recorded. For each collecting appliance type indicate if it is used. Individuals with spinal cord lesions that use such appliances less than once a month, "for the sake of safety", and who have no more than exceptional episodes of leakage during a year should be excluded (adapted from Levi and Ertzgaard 1998). For other possible collecting appliances it is recommended to write them in a textfield, from which it will be possible to retrieve more detailed data when necessary.

Biering-SØrensen F, Craggs M, Kennelly M, Schick E, Wyndaele JJ. International Lower Urinary Tract Function Basic Spinal Cord Injury Data Set. Spinal Cord 2008 May;46(5):325-30. Levi R, Ertzgaard P, The Swedish Spinal Cord Injury Council 1998. Quality indicators in spinal cord injury care: A Swedish collaboration project. Scand J Rehabil Med 1998;Suppl.38:1-80. Adult Supplemental 3.00 2013-07-17 09:26:36.973 International SCI Lower Urinary Tract Function Basic Data Set The International SCI Data Sets The International SCI Data Sets 4000

Free-Form Entry

C06019 Bladder average empty per day past week number BladAvgEmpPerDayPstWkNum Average amount of voluntary bladder emptyings per day during the last week Average amount of voluntary bladder emptyings per day during the last week Average number of voluntary bladder emptyings per day during the last week Numeric Values

The average number of voluntary bladder emptying per day during the last week is given separately. This number refers to the number of voluntary bladder emptying irrespective of the method. Any of the following methods may be used separate or in combination: normal voiding, voluntary bladder reflex triggering, bladder expression, intermittent catheterization, or sacral anterior root stimulation. If a combination of methods is used during the same bladder emptying it should only be counted as one bladder emptying. The number is given as an average for the last week only, as the individual is not expected to remember this for a longer period of time. The number is given as the nearest integer number.

Biering-SØrensen F, Craggs M, Kennelly M, Schick E, Wyndaele JJ. International Lower Urinary Tract Function Basic Spinal Cord Injury Data Set. Spinal Cord 2008 May;46(5):325-30. Adult Supplemental 3.00 2013-07-17 09:26:36.973 International SCI Lower Urinary Tract Function Basic Data Set The International SCI Data Sets The International SCI Data Sets

Free-Form Entry

C19184 Urinary tract drug use indicator UrinaryTractDrugUseInd Indicator for urinary tract drugs used within the last year Indicator for urinary tract drugs used within the last year Any drugs for the urinary tract within the last year No;Yes;Unknown No;Yes;Unknown Alphanumeric Adult;Pediatric Supplemental 1.00 2014-06-02 10:58:55.0 International SCI Lower Urinary Tract Function Basic Data Set The International SCI Data Sets The International SCI Data Sets

Single Pre-Defined Value Selected

C06020 Urinary incontinence past three months indicator UrinIncntPstThreeMoInd Indicator of involuntary urine leakage (incontinence) within the last three months. Urinary incontinence is defined by International Continence Society (Abrams et al. 2002) as the complaint of any involuntary leakage of urine Indicator of involuntary urine leakage (incontinence) within the last three months. Urinary incontinence is defined by International Continence Society (Abrams et al. 2002) as the complaint of any involuntary leakage of urin Any involuntary urine leakage (incontinence) within the last three months No;Yes;Not applicable;Unknown No;Yes;Not applicable;Unknown Alphanumeric

Bladder reflex triggering including into a collection system, e.g. condom catheter may be voluntary and thus not considered as incontinence. However, if the condom or ostomy bag fall off and the individual complains of incontinence then it should be recorded as "Yes". In each specific circumstance the urinary incontinence should be further described by specifying relevant factors such as type, frequency, severity, precipitating factors, social impact, effect on hygiene and quality of life, etc. (Abrams et al. 2002). In the Basic Data Set only a simple indication of severity and collection of urine is given. More detailed information is to be given in an Expanded Data Set (Biering-SØrensen et al. 2006).

Abrams P, Cardozo L, Fall M, Griffiths D, Rosier P, Ulmsten U, van Kerrebroeck P, Victor A, Wein A. The Standardisation of Terminology of Lower Urinary Tract Function: Report from the Standardisation Sub-committee of the International Continence Society. Neurourology and Urodynamics 2002:21;167-78. Biering-SØrensen F, Craggs M, Kennelly M, Schick E, Wyndaele JJ. International Lower Urinary Tract Function Basic Spinal Cord Injury Data Set. Spinal Cord 2008 May;46(5):325-30. Adult Supplemental 3.00 2013-07-17 09:26:36.973 International SCI Lower Urinary Tract Function Basic Data Set The International SCI Data Sets The International SCI Data Sets

Single Pre-Defined Value Selected

C19185 Urinary tract drug use other text UrinaryTractDrugUseOTH The free-text field related to 'Urinary tract drug use indicator' specifying other text. Indicator for urinary tract drugs used within the last year The free-text field related to 'Urinary tract drug use indicator' specifying other text. Indicator for urinary tract drugs used within the last year Other, specify Alphanumeric Adult;Pediatric Supplemental 1.00 2014-06-02 11:11:36.0 International SCI Lower Urinary Tract Function Basic Data Set The International SCI Data Sets The International SCI Data Sets 4000

Free-Form Entry

C06021 Urinary incontinence collect appliance type UrinInconColApplTyp Type or types of collecting appliances for urinary incontinence. Collecting appliances are any externally applied aids to avoid urinary leakage, or devices for collection of urine Type or types of collecting appliances for urinary incontinence. Collecting appliances are any externally applied aids to avoid urinary leakage, or devices for collection of urin Collecting appliances for urinary incontinence Condom catheter/sheath;Diaper;Ostomy bag;Other,specify Condom catheter/sheath;Diaper;Ostomy bag;Other, specify Alphanumeric

Regular use of one or more collecting appliances is to be recorded. For each collecting appliance type indicate if it is used. Individuals with spinal cord lesions that use such appliances less than once a month, "for the sake of safety", and who have no more than exceptional episodes of leakage during a year should be excluded (adapted from Levi and Ertzgaard 1998). For other possible collecting appliances it is recommended to write them in a textfield, from which it will be possible to retrieve more detailed data when necessary.

Biering-SØrensen F, Craggs M, Kennelly M, Schick E, Wyndaele JJ. International Lower Urinary Tract Function Basic Spinal Cord Injury Data Set. Spinal Cord 2008 May;46(5):325-30. Levi R, Ertzgaard P, The Swedish Spinal Cord Injury Council 1998. Quality indicators in spinal cord injury care: A Swedish collaboration project. Scand J Rehabil Med 1998;Suppl.38:1-80. Adult Supplemental 3.00 2013-07-17 09:26:36.973 International SCI Lower Urinary Tract Function 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.

Biering-SØrensen F, Craggs M, Kennelly M, Schick E, Wyndaele JJ. International Lower Urinary Tract Function Basic Spinal Cord Injury Data Set. Spinal Cord 2008 May;46(5):325-30. Adult;Pediatric Supplemental 1.00 2014-06-05 13:10:49.0 International SCI Lower Urinary Tract Function 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 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.).

Biering-SØrensen F, Craggs M, Kennelly M, Schick E, Wyndaele JJ. International Lower Urinary Tract Function Basic Spinal Cord Injury Data Set. Spinal Cord 2008 May;46(5):325-30. Adult;Pediatric Supplemental 3.20 2022-08-18 17:27:56.0 International SCI Lower Urinary Tract Function Basic Data Set The International SCI Data Sets The International SCI Data Sets

Free-Form Entry

C06022 Urinary incontinence collect appliance type use indicator UrinIncntCollApplTypUseInd Indicator of whether or not the type of collecting appliance for urinary incontinence was in use on the date of data collection Indicator of whether or not the type of collecting appliance for urinary incontinence was in use on the date of data collectio Collecting appliances for urinary incontinence Yes;No;Unknown Yes;No;Unknown Alphanumeric

Choose one for each type of collecting appliance. Regular use of one or more collecting appliances is to be recorded. Individuals with spinal cord lesions that use such appliances less than once a month, "for the sake of safety", and who have no more than exceptional episodes of leakage during a year should be excluded (adapted from Levi and Ertzgaard 1998). For other possible collecting appliances it is recommended to write them in a textfield, from which it will be possible to retrieve more detailed data when necessary.

Biering-SØrensen F, Craggs M, Kennelly M, Schick E, Wyndaele JJ. International Lower Urinary Tract Function Basic Spinal Cord Injury Data Set. Spinal Cord 2008 May;46(5):325-30. Levi R, Ertzgaard P, The Swedish Spinal Cord Injury Council 1998. Quality indicators in spinal cord injury care: A Swedish collaboration project. Scand J Rehabil Med 1998;Suppl.38:1-80. Adult Supplemental 3.00 2013-07-17 09:26:36.973 International SCI Lower Urinary Tract Function Basic Data Set The International SCI Data Sets The International SCI Data Sets

Single Pre-Defined Value Selected

C21668 ICD-10-CM code SurgTherapuProcICD10CMCode Code from the International Classification of Diseases, Tenth Revision, Clinical Modification (ICD-10-CM) for the selected surgical procedure Code from the International Classification of Diseases, Tenth Revision, Clinical Modification (ICD-10-CM) for the selected surgical procedure Surgical procedures on the urinary tract Other, specify 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 1.00 2013-08-28 16:08:00.453 International SCI Lower Urinary Tract Function Basic Data Set The International SCI Data Sets The International SCI Data Sets

Multiple Pre-Defined Values Selected

C05108 Surgical or therapeutic procedure type SurgTherapProcedurTyp Type of surgical or therapeutic procedure received by the participant/subject Type of surgical or therapeutic procedure received by the participant/subject Surgical procedures on the urinary 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 transection;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 transection;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 urinary tract indicate if it was performed

Biering-SØrensen F, Craggs M, Kennelly M, Schick E, Wyndaele JJ. International Lower Urinary Tract Function Basic Spinal Cord Injury Data Set. Spinal Cord 2008 May;46(5):325-30. Adult;Pediatric Supplemental 3.00 2013-07-25 08:54:08.2 International SCI Lower Urinary Tract Function Basic Data Set The International SCI Data Sets The International SCI Data Sets

Multiple Pre-Defined Values Selected

CSV