CDE Detailed Report

Disease: Spinal Cord Injury
Sub-Domain: The International SCI Data Sets
CRF: International SCI Female and Male Sexual Function Basic Data Sets v2.0

Displaying 1 - 15 of 15
CDE ID CDE Name Variable Name Definition Short Description Additional Notes (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 / Guideline) Sub Domain Name Domain Name Size Input Restrictions Min Value Max Value Measurement Type External Id Loinc External Id Snomed External Id caDSR External Id CDISC
C06318 Reflex erection scale ReflexErectionScale A reflex erection is penile tumescence with resulting increase in size and firmness of the penis that occurs with genital stimulation, which in usual circumstances should be adequate to allow vaginal penetration. Scale for how the male participant's reflex erection is affected by the spinal cord injury. Reflex Erection Absent;Normal;Not applicable (Patient female);Reduced/altered;Unknown Refers to a complete inability to achieve penile tumescence and firmness to genital stimulation after the spinal cord lesion;Refers to the presence of a reflex erection to genital stimulation that is equivalent in quality and duration as prior to spinal cord lesion;;Refers to presence of an ability to achieve erections in response to genital stimulation that is partially impaired or altered in quality and/or duration as compared to prior to the spinal cord lesion;Refers to reports by individuals that have not been sexually active after the spinal cord lesion thus they do not know if they have changes in reflex erection Alphanumeric

Choose one

Alexander MS, Biering-SØrensen F, Elliott S, Kreuter M, SØnksen J. International Spinal Cord Injury Female Sexual and Reproductive Function Basic Data Set. Spinal Cord. 2011 Jul;49(7):787-90. Alexander MS, Biering-SØrensen F, Elliott S, Kreuter M, SØnksen J. International Spinal Cord Injury Male Sexual Function Basic Data Set. Spinal Cord. 2011 Jul;49(7):795-8. Adult;Pediatric Supplemental 3.00 2013-07-17 09:26:36.973 International SCI Female and Male Sexual Function Basic Data Sets v2.0 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 recorded. Site Alphanumeric

The site identifiers or IDs should be assigned by the study.

Alexander MS, Biering-SØrensen F, Elliott S, Kreuter M, SØnksen J. International Spinal Cord Injury Female Sexual and Reproductive Function Basic Data Set. Spinal Cord. 2011 Jul;49(7):787-90. Alexander MS, Biering-SØrensen F, Elliott S, Kreuter M, SØnksen J. International Spinal Cord Injury Male Sexual Function Basic Data Set. Spinal Cord. 2011 Jul;49(7):795-8. Adult;Pediatric Supplemental 3.00 2013-07-17 09:26:36.973 International SCI Female and Male Sexual Function Basic Data Sets v2.0 The International SCI Data Sets The International SCI Data Sets 255

Free-Form Entry

C06319 Ejaculation scale EjaculationScale Scale for how the male participant's ejaculation is affected by the spinal cord injury. Scale for how the male participant's ejaculation is affected by the spinal cord injury. Ejaculation Absent;Normal;Not applicable (Patient female);Reduced/altered;Unknown Refers to an absence of external semen propulsion to sexual stimulation following the spinal cord lesion despite attempts to ejaculate;Refers to normal antegrade ejaculation occurring after a similar amount of sexual stimulation as prior to spinal cord lesion;;Refers to ejaculation that is possible after sexual stimulation, but is changed after the spinal cord lesion in either time required to ejaculate, or changes in semen volume, color, or quality;Refers to reports by individuals that they have not been sexually active thus they do not know if they are able to achieve ejaculation after the spinal cord lesion Alphanumeric

Choose one

Alexander MS, Biering-SØrensen F, Elliott S, Kreuter M, SØnksen J. International Spinal Cord Injury Female Sexual and Reproductive Function Basic Data Set. Spinal Cord. 2011 Jul;49(7):787-90. Alexander MS, Biering-SØrensen F, Elliott S, Kreuter M, SØnksen J. International Spinal Cord Injury Male Sexual Function Basic Data Set. Spinal Cord. 2011 Jul;49(7):795-8. Adult;Pediatric Supplemental 3.00 2013-07-17 09:26:36.973 International SCI Female and Male Sexual Function Basic Data Sets v2.0 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 performed. 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.).

Alexander MS, Biering-SØrensen F, Elliott S, Kreuter M, SØnksen J. International Spinal Cord Injury Female Sexual and Reproductive Function Basic Data Set. Spinal Cord. 2011 Jul;49(7):787-90. Alexander MS, Biering-SØrensen F, Elliott S, Kreuter M, SØnksen J. International Spinal Cord Injury Male Sexual Function Basic Data Set. Spinal Cord. 2011 Jul;49(7):795-8. Adult;Pediatric Supplemental 3.00 2013-07-24 21:00:23.88 International SCI Female and Male Sexual Function Basic Data Sets v2.0 The International SCI Data Sets The International SCI Data Sets

Free-Form Entry

C18797 Sexual problem unrelate spinal cord lesion specify text SexProbUnrltSpnlCrdLesnST The free-text field related to 'Sexual problem unrelate spinal cord lesion indicator'. Indicator of whether the person complained of sexual issues prior to or after the spinal cord lesion that are unrelated to the spinal cord lesion. The free-text field related to 'Sexual problem unrelate spinal cord lesion indicator'. Indicator of whether the person complained of sexual issues prior to or after the spinal cord lesion that are unrelated to the spinal cord lesion. Yes, specify Alphanumeric

Choose one. If a preexisting or concomitant sexual problem is present it is not possible to determine the exact impact of the spinal cord lesion on sexual function and the data should be appropriately identified. Unknown refers to individuals who were not sexually active prior to their lesion, thus it would be unknown if sexual dysfunction was present.

Alexander MS, Biering-SØrensen F, Elliott S, Kreuter M, SØnksen J. International Spinal Cord Injury Female Sexual and Reproductive Function Basic Data Set. Spinal Cord. 2011 Jul;49(7):787-90. Alexander MS, Biering-SØrensen F, Elliott S, Kreuter M, SØnksen J. International Spinal Cord Injury Male Sexual Function Basic Data Set. Spinal Cord. 2011 Jul;49(7):795-8. Adult;Pediatric Supplemental 3.00 2013-07-17 09:26:36.973 International SCI Female and Male Sexual Function Basic Data Sets v2.0 The International SCI Data Sets The International SCI Data Sets 4000

Free-Form Entry

C06309 Sexual issue discussion willingness indicator SexIssDiscssnWllngnssInd Indicator of the participant's willingness to discuss sexual issues Indicator of the participant's willingness to discuss sexual issues Interest in discussing sexual issues Yes;No, prefers the discussion is stopped;Yes, but only willing to provide information for the medical record Yes;No, prefers the discussion is stopped;Yes, but only willing to provide information for the medical record Alphanumeric

Choose one. Used in combination with the date, this element allows one to document a man/women's desire to discuss sexual issues at a specific point in time.

Alexander MS, Biering-SØrensen F, Elliott S, Kreuter M, SØnksen J. International Spinal Cord Injury Female Sexual and Reproductive Function Basic Data Set. Spinal Cord. 2011 Jul;49(7):787-90. Alexander MS, Biering-SØrensen F, Elliott S, Kreuter M, SØnksen J. International Spinal Cord Injury Male Sexual Function Basic Data Set. Spinal Cord. 2011 Jul;49(7):795-8. Adult;Pediatric Supplemental 3.00 2013-07-17 09:26:36.973 International SCI Female and Male Sexual Function Basic Data Sets v2.0 The International SCI Data Sets The International SCI Data Sets

Single Pre-Defined Value 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.

Alexander MS, Biering-SØrensen F, Elliott S, Kreuter M, SØnksen J. International Spinal Cord Injury Female Sexual and Reproductive Function Basic Data Set. Spinal Cord. 2011 Jul;49(7):787-90. Alexander MS, Biering-SØrensen F, Elliott S, Kreuter M, SØnksen J. International Spinal Cord Injury Male Sexual Function Basic Data Set. Spinal Cord. 2011 Jul;49(7):795-8. Adult;Pediatric Supplemental 1.00 2014-06-05 13:10:49.0 International SCI Female and Male Sexual Function Basic Data Sets v2.0 The International SCI Data Sets The International SCI Data Sets 255

Free-Form Entry

C06310 Sexual problem unrelate spinal cord lesion indicator SexProbUnrltSpnlCrdLesnInd Indicator of whether the person complained of sexual issues prior to or after the spinal cord lesion that are unrelated to the spinal cord lesion. Indicator of whether the person complained of sexual issues prior to or after the spinal cord lesion that are unrelated to the spinal cord lesion. Sexual problems prior or unrelated to the spinal cord lesion Yes, specify;No;Unknown Yes, specify;No;Unknown Alphanumeric

Choose one. If a preexisting or concomitant sexual problem is present it is not possible to determine the exact impact of the spinal cord lesion on sexual function and the data should be appropriately identified. Unknown refers to individuals who were not sexually active prior to their lesion, thus it would be unknown if sexual dysfunction was present.

Alexander MS, Biering-SØrensen F, Elliott S, Kreuter M, SØnksen J. International Spinal Cord Injury Female Sexual and Reproductive Function Basic Data Set. Spinal Cord. 2011 Jul;49(7):787-90. Alexander MS, Biering-SØrensen F, Elliott S, Kreuter M, SØnksen J. International Spinal Cord Injury Male Sexual Function Basic Data Set. Spinal Cord. 2011 Jul;49(7):795-8. Adult;Pediatric Supplemental 3.00 2013-07-17 09:26:36.973 International SCI Female and Male Sexual Function Basic Data Sets v2.0 The International SCI Data Sets The International SCI Data Sets

Single Pre-Defined Value Selected

C55578 Sexual orientation type SexualOrientTyp Self-reported sexual orientation of the participant/subject Self-reported sexual orientation of the participant/subject Sexual orientation Heterosexual;Bisexual;Homosexual (gay/lesbian);Asexual;Prefer not to say;Do not know Heterosexual;Bisexual;Homosexual (gay/lesbian);Asexual;Prefer not to say;Do not know Alphanumeric

Used in combination with the date, this variable allows one to document a person's current sexual preferences.
Heterosexual: Only sexually interested in men
Bisexual: Sexually interested in both women and men
Homosexual (lesbian): Only sexually interested in women
Asexual: Has no sexual interest
Prefer not to say: The individual does not wish to answer this question
Do not know: The individual does not know the answer to this question

Sell, RL. Defining and Measuring Sexual Orientation for Research. In: Meyer I H, Northridge M E (Eds). The Health of Sexual Minorities. Public Health Perspectives on Lesbian, Gay, Bisexual and Transgender Populations. Springer; 2007. 355-374 Adult;Pediatric Supplemental 3.00 2013-08-28 16:08:00.453 International SCI Female and Male Sexual Function Basic Data Sets v2.0 The International SCI Data Sets The International SCI Data Sets

Multiple Pre-Defined Values Selected

C06312 Sexual dysfunction relate spinal cord lesion indicator SexDysfnctnRltSpnlCrdLesnInd Indicator of whether the participant has a history of or reports personal distress as a result of sexual dysfunction. Sexual dysfunction may be regarding desire, arousal, pain or orgasmic dysfunction. Indicator of whether the participant has a history of or reports personal distress as a result of sexual dysfunction. Sexual dysfunction may be regarding desire, arousal, pain or orgasmic dysfunction. Sexual dysfunction related to the spinal cord lesion Yes;No;Unknown Yes;No;Unknown Alphanumeric

Choose one. Unknown refers to reports by individuals who have not been sexually active after the spinal cord lesion thus they do not know if they have a sexual dysfunction

Alexander MS, Biering-SØrensen F, Elliott S, Kreuter M, SØnksen J. International Spinal Cord Injury Female Sexual and Reproductive Function Basic Data Set. Spinal Cord. 2011 Jul;49(7):787-90. Alexander MS, Biering-SØrensen F, Elliott S, Kreuter M, SØnksen J. International Spinal Cord Injury Male Sexual Function Basic Data Set. Spinal Cord. 2011 Jul;49(7):795-8. Sipski ML, Alexander CJ, Rosen RC. The Neurologic Basis of Sexual Arousal and Orgasm in Women: Effects of Spinal Cord Injury. Ann Neurol 2001;49:35-44. Adult;Pediatric Supplemental 3.00 2013-07-17 09:26:36.973 International SCI Female and Male Sexual Function Basic Data Sets v2.0 The International SCI Data Sets The International SCI Data Sets

Single Pre-Defined Value Selected

C06313 Psychogenic genital arousal scale PsychogenicGentialArousalScale Scale for how the female participant's psychogenic genital arousal is affected by the spinal cord injury. Scale for whether the female's psychogenic genital arousal is affected by the spinal cord injury. Psychogenic Genital Arousal Normal;Reduced/altered;Absent;Unknown;Not applicable (Patient female) Includes reports of no change in time to achieve lubrication, amount of lubrication or duration of lubrication subsequent to the spinal cord lesion;Includes reports of either altered time (longer or shorter) to achieve, amount of lubrication, or duration of lubrication. It would also include reports of excessive psychogenic lubrication;Refers to women having no lubrication despite being psychologically aroused;Refers to reports by individuals that they have not been sexually active thus do not know if they are able to achieve psychogenic genital arousal after the spinal cord lesion; Alphanumeric

Choose one. When querying individuals about psychogenic arousal it is recommended that the interviewer focus on the woman's awareness of vaginal lubrication as opposed to clitoral engorgement.

Alexander MS, Biering-SØrensen F, Elliott S, Kreuter M, SØnksen J. International Spinal Cord Injury Female Sexual and Reproductive Function Basic Data Set. Spinal Cord. 2011 Jul;49(7):787-90. Alexander MS, Biering-SØrensen F, Elliott S, Kreuter M, SØnksen J. International Spinal Cord Injury Male Sexual Function Basic Data Set. Spinal Cord. 2011 Jul;49(7):795-8. Adult;Pediatric Supplemental 3.00 2013-07-17 09:26:36.973 International SCI Female and Male Sexual Function Basic Data Sets v2.0 The International SCI Data Sets The International SCI Data Sets

Single Pre-Defined Value Selected

C06314 Reflex genital arousal scale ReflexGenitalArousalScale Scale for how the female's reflex genital arousal is affected by the spinal cord injury. Scale for how the female's reflex genital arousal is affected by the spinal cord injury. Relfex Genital Arousal Normal;Reduced/altered;Absent;Unknown;Not applicable (Patient male) No change in time to achieve lubrication, amount of lubrication or duration of lubrication with genital stimulation subsequent to the spinal cord lesion;Includes reports of either altered time (longer or shorter) to achieve, amount of lubrication, or duration of lubrication. It would also include reports of excessive reflex lubrication. Absent refers to individuals having no awareness of lubrication despite being genitally stimulated;Reflex arousal is thought to only to happen in the presence of complete cauda equina or conus lesion;Refers to reports by individuals that they have not been sexually active thus they do not know if they are able to achieve reflex arousal after the spinal cord lesion; Alphanumeric

Choose one. When querying individuals about reflex arousal it is recommended that the interviewer focus on the woman's awareness of vaginal lubrication as opposed to clitoral engorgement.

Alexander MS, Biering-SØrensen F, Elliott S, Kreuter M, SØnksen J. International Spinal Cord Injury Female Sexual and Reproductive Function Basic Data Set. Spinal Cord. 2011 Jul;49(7):787-90. Alexander MS, Biering-SØrensen F, Elliott S, Kreuter M, SØnksen J. International Spinal Cord Injury Male Sexual Function Basic Data Set. Spinal Cord. 2011 Jul;49(7):795-8. Adult;Pediatric Supplemental 3.00 2013-07-17 09:26:36.973 International SCI Female and Male Sexual Function Basic Data Sets v2.0 The International SCI Data Sets The International SCI Data Sets

Single Pre-Defined Value Selected

C06315 Orgasmic function scale OrgasmicFunctScale Scale that assesses orgasmic function. Females: Orgasm is the perception of sensation of feeling good through sexual stimulation, of reaching a climax after which the woman feels gratified. May be accompanied by an overall increase and then decrease in muscle tone. The potential is based on history. Males: Orgasm is the perception of sensation of a peak feeling of sexual release, or climax, after which the man feels gratified. It may be accompanied by an overall increase and then decrease in muscle tone and may or may not be accompanied by ejaculation. The potential is based on history. Psychogenic genital arousal usually manifests itself as the presence of clitoral engorgement and vaginal lubrication, amongst other signs, and occurs from arousal generated from the brain e.g. through hearing, seeing, feeling or fantasy (erotic thoughts) Orgasmic Function Normal;Reduced/altered;Absent;Unknown Normal;Reduced/altered;Absent;Unknown Alphanumeric

Choose one

Alexander MS, Biering-SØrensen F, Elliott S, Kreuter M, SØnksen J. International Spinal Cord Injury Female Sexual and Reproductive Function Basic Data Set. Spinal Cord. 2011 Jul;49(7):787-90. Alexander MS, Biering-SØrensen F, Elliott S, Kreuter M, SØnksen J. International Spinal Cord Injury Male Sexual Function Basic Data Set. Spinal Cord. 2011 Jul;49(7):795-8. Adult;Pediatric Supplemental 3.00 2013-07-17 09:26:36.973 International SCI Female and Male Sexual Function Basic Data Sets v2.0 The International SCI Data Sets The International SCI Data Sets

Single Pre-Defined Value Selected

C06316 Menstruation scale MenstruationScale Scale for how the female participant's menstruation is affected by the spinal cord injury Psychogenic erection is penile tumescence with resulting increase in size and firmness of the penis that occurs without physical stimulation, which in usual circumstances should be adequate to allow penetration. Menstruation Normal;Reduced/altered;Unknown;Not applicable (For female);Not applicable (Patient male) Refers to no change in duration, frequency or quantity of menstrual flow and no change in subjective experience or symptoms of menstruation after the spinal cord lesion;i.e. Menstruation has been initiated, though partially impaired or changed. This refers to a change in the duration, frequency or amount of menstrual blood flow after spinal cord lesion. It can also refer to a change in the quality of sensations or other autonomic phenomena associated with menses;Means the impact of the spinal cord lesion on menstruation is unknown;Means the woman was not menstruating at the time of spinal cord lesion, thus there is not an impact on menstruation; Alphanumeric

Choose one

Alexander MS, Biering-SØrensen F, Elliott S, Kreuter M, SØnksen J. International Spinal Cord Injury Female Sexual and Reproductive Function Basic Data Set. Spinal Cord. 2011 Jul;49(7):787-90. Alexander MS, Biering-SØrensen F, Elliott S, Kreuter M, SØnksen J. International Spinal Cord Injury Male Sexual Function Basic Data Set. Spinal Cord. 2011 Jul;49(7):795-8. Adult;Pediatric Supplemental 3.00 2013-07-17 09:26:36.973 International SCI Female and Male Sexual Function Basic Data Sets v2.0 The International SCI Data Sets The International SCI Data Sets

Single Pre-Defined Value Selected

C06317 Psychogenic erection scale PsychogenicErectionScale Psychogenic erection is erection that occurs solely based on arousal in the brain e.g. through hearing, seeing, feeling or fantasy (erotic thoughts). Psychogenic erection is penile tumescence with resulting increase in size and firmness of the penis that occurs without physical stimulation, which in usual circumstances should be adequate to allow penetration. Scale for how the male participant's psychogenic erection is affected by the spinal cord injury. Pyschogenic Erection Absent;Normal;Not applicable (Patient female);Reduced/altered;Unknown Refers to a complete inability to achieve penile tumescence and firmness to psychologic stimulation after the spinal cord lesion;Refers to presence of an ability to achieve and maintain erections in response to psychologic stimulation after spinal cord lesion that is equivalent in quality and duration as prior to spinal cord lesion;;Refers to presence of an ability to achieve erections in response to psychologic stimulation that is partially impaired or altered in quality and/or duration as compared to prior to the spinal cord lesion;Refers to reports by individuals that have not been sexually active after the spinal cord lesion thus they do not know if they have changes in psychogenic erection Alphanumeric

Choose one

Alexander MS, Biering-SØrensen F, Elliott S, Kreuter M, SØnksen J. International Spinal Cord Injury Female Sexual and Reproductive Function Basic Data Set. Spinal Cord. 2011 Jul;49(7):787-90. Alexander MS, Biering-SØrensen F, Elliott S, Kreuter M, SØnksen J. International Spinal Cord Injury Male Sexual Function Basic Data Set. Spinal Cord. 2011 Jul;49(7):795-8. Courtois FJ, Charvier KF, Leriche A, Raymond DP. Sexual function in spinal cord injured men. I. Assessing sexual capacity. Paraplegia. 1993;31:771-784. Courtois FJ, Charvier KF, Leriche A, Raymond DP, Eyssette M. Clinical approach to erectile dysfunction in spinal cord injured men. A review of clinical and experimental data. Paraplegia. 1995;33;628-635. Giuliano FA, Rampin O, Benoit G Jardin A. Neural control of penile erection. Uro Clin North Am. 1995;22(4):747-66. Adult;Pediatric Supplemental 3.00 2013-07-17 09:26:36.973 International SCI Female and Male Sexual Function Basic Data Sets v2.0 The International SCI Data Sets The International SCI Data Sets

Single Pre-Defined Value Selected

CSV