American Spinal Injury Association Board Research Articles

International spinal cord injury socio-demographic basic data set (version 1.0).

Consensus based on the literature. Create an International Spinal Cord Injury (SCI) Socio-Demographic Basic Data Set (Version 1.0). International. The development included an iterative process where the authors reviewed existing variables containing socio-demographic variables and created a first dataset draft, which was followed by several revisions through email communications. In addition, the work was conducted in parallel with a similar endeavour within the National Institute of Neurological Disorders and Stroke SCI Common Data Elements project in the United States. Subsequently, harmonization between the two projects was sought. Following this, a review process was initiated, including The International SCI Data Sets Committee, the American Spinal Injury Association (ASIA) Board, and the International Spinal Cord Society (ISCoS) Scientific and Executive Committees, and then by publishing on the respective websites for membership feedback. The draft was sent to about 40 national and international organizations and several interested individuals for feedback. All review comments were discussed in the working group and responded to before the final draft was developed, and finally approved by ASIA Board and the ISCoS Scientific and Executive committees. The final International SCI Socio-Demographic Basic Data Set includes the following variables: Date of data collection, Marital status, Household member count, Years of formal education, and Primary occupation. The International SCI Socio-Demographic Basic Data Set will facilitate uniform data collection and reporting of socio-demographic information at the time of injury as well as at post-injury follow-ups to facilitate the evaluation and comparisons across studies.

International spinal cord injury urodynamic basic data set (version 2.0).

Revision, review, and presentation of the International Spinal Cord Injury (SCI) Urodynamic Basic Data Set (version 2.0). Describe the revision and review and present the dataset. International. The first version of the dataset was revised according to new knowledge and suggestions. The review included International SCI Data Sets Committee, American Spinal Injury Association (ASIA) board, International Spinal Cord Society (ISCoS) executive and scientific committees, major organizations, and interested individuals. The dataset was also on ASIA and ISCoS websites. All replies were answered and appropriate adjustments made. Finally, the dataset was endorsed by ASIA board, and ISCoS executive and scientific committees. Among revisions are adoptions of new terminology by the International Continence Society. The variable "Detrusor function" has been divided into "Detrusor function during filling cystometry" and "Detrusor function during voiding". The response categories have been adjusted, deleting 'Not applicable' for the variables "Detrusor leak point pressure during filling cystometry", "Cystometric bladder capacity during filling cystometry" and "Urethral function during voiding". The cutoff-value for low bladder compliance has been modified from 10 mL/cm H2O to 20 mL/cm H2O. The International SCI Urodynamic Basic Data Set (version 2.0) with its complete syllabus is available from http://www.iscos.org.uk/international-sci-data-sets.

International Spinal Cord Injury Lower Urinary Tract Function Basic Data Set (version 2.0).

Revision, review, and presentation of the International Spinal Cord Injury (SCI) Lower Urinary Tract (LUT) Function Basic Data Set (version 2.0). Describe the revision and review and present the data set. International. The first version of the data set was revised according to new knowledge and suggestions. The review included International SCI Data Sets Committee, American Spinal Injury Association (ASIA) board, International Spinal Cord Society (ISCoS) executive and scientific committees, major organizations, and interested individuals. The data set was also on ASIA and ISCoS websites. All replies were answered and appropriate adjustments made. Finally, the data set was endorsed by ASIA board, and ISCoS executive and scientific committees. Among revisions are adoptions of new terminology by the International Continence Society. For most variables, advice for collection of information from pediatric patients stated. For the variable 'Bladder emptying', is in the data collection form to the response category 'Normal voiding' expanded. 'Sacral Anterior Root Stimulator' is deleted as response category. For the variable 'Any involuntary urine leakage (incontinence) within the last 4 weeks' 'last 4 weeks' has replaced 'last 3 months'. The response categories have been adjusted to: 'Daily', 'Once or more per week (but not daily)', 'Less than once per week', 'Never', 'Not applicable' and 'Unknown'. For the variable 'Any drugs for the urinary tract within the last four weeks' 'last four weeks' has replaced 'last year'. The International SCI LUT Function Basic Data Set (version 2.0) with its complete syllabus is available from http://www.iscos.org.uk/international-sci-data-sets.

International spinal cord injury male sexual function and female sexual and reproductive function basic data sets-version 2.0.

Data set review and modification. To describe modifications in the International Spinal Cord Injury (SCI) Male Sexual Function Basic Data Set Version 2.0 and the International SCI Female Sexual and Reproductive Function Basic Data Set Version 2.0. International expert work group using on line communication. An international team of experts was compiled to review and revise the International SCI Male Sexual Function and Female Sexual and Reproductive Function Basic Data Sets Version 1.0. The group adapted Version 1.0 based upon review of published research, suggestions from concerned individuals and on line work group consensus. The revised data sets were then posted on the International Spinal Cord Society (ISCoS) and American Spinal Injury Association (ASIA) websites for 2 months for review. Subsequently, the data sets were approved by the ISCoS Scientific and Executive Committees and ASIA board of directors. The data sets were modified to a self-report format. They were reviewed for appropriateness for the pediatric age group and adapted to include a new variable to address the issue of sexual orientation. A clarification of the difference between the data sets and the autonomic standards was also developed. Sexuality is a continuously evolving topic. Modifications were needed to address this topic in a comprehensive fashion. It is recommended that Version 2.0 of these data sets are used for ongoing documentation of sexual status in the medical record and for documentation of sexual concerns during on-going research.

International spinal cord injury bowel function basic data set (Version 2.0)

International expert working group. To revise the International Spinal Cord Injury (SCI) Bowel Function Basic Data Set as a standardized format for the collecting and reporting of a minimal amount of information on bowel function in clinical practice and research. Working group appointed by the American Spinal injury association (ASIA) and the International Spinal Cord Society (ISCoS). The draft prepared by the working group was reviewed by the International SCI Data Set Committee and later by members of the ISCoS Executive and Scientific Committees and the ASIA board. The revised data set was posted on the ASIA and ISCoS websites for 1 month to allow further comments and suggestions. Changes resulting from a Delphi process among experts in children with SCI were included. Members of ISCoS Executive and Scientific Committees and the ASIA board made a final review and approved the data set. The International SCI Bowel Function Basic Data Set (Version 2.0) consists of the following 16 items: date of data collection, gastrointestinal and anal sphincter dysfunction unrelated to SCI, surgical procedures on the gastrointestinal tract, defecation method and bowel-care procedures, average time required for defecation, frequency of defecation, uneasiness, headache or perspiration during defecation, digital stimulation or evacuation of the anorectum, frequency of fecal incontinence, flatus incontinence, need to wear pad or plug, oral laxatives and prokinetics, anti-diarrheal agents, perianal problems, abdominal pain and discomfort and the neurogenic bowel dysfunction score. The International SCI Bowel Function Basic Data Set (Version 2.0) has been developed.

International Spinal Cord Injury Urinary Tract Infection Basic Data Set

To develop an International Spinal Cord Injury (SCI) Urinary Tract Infection (UTI) Basic Data Set presenting a standardized format for the collection and reporting of a minimal amount of information on UTIs in daily practice or research. International working group. The draft of the Data Set developed by a working group was reviewed by the Executive Committee of the International SCI Standards and Data Sets, and later by the International Spinal Cord Society (ISCoS) Scientific Committee and the American Spinal Injury Association (ASIA) Board. Relevant and interested scientific and professional (international) organizations and societies (∼40) were also invited to review the data set, and it was posted on the ISCoS and ASIA websites for 3 months to allow comments and suggestions. The ISCoS Scientific Committee, Executive Committee and ASIA Board received the data set for final review and approval. The International SCI UTI Basic Data Set includes the following variables: date of data collection, length of time of sign(s)/symptom(s), results of urine dipstick test for nitrite and leukocyte esterase, urine culture results and resistance pattern. The complete instructions for data collection and the data form itself are freely available on the website of ISCoS (http://www.iscos.org.uk).

International Spinal Cord Injury Skin and Thermoregulation Function Basic Data Set

To create an international spinal cord injury (SCI) skin and thermoregulation basic data set within the framework of the International SCI Data Sets. An international working group. The draft of the data set was developed by a working group comprising members appointed by the American Spinal Injury Association (ASIA), the International Spinal Cord Society (ISCoS) and a representative of the Executive Committee of the International SCI Standards and Data Sets. The final version of the data set was developed after review and comments by members of the Executive Committee of the International SCI Standards and Data Sets, the ISCoS Scientific Committee, ASIA Board, relevant and interested international organizations and societies, individual persons with specific interest and the ISCoS Council. To make the data set uniform, each variable and each response category within each variable have been specifically defined to promote the collection and reporting of comparable minimal data. Variables included in the present data set are: date of data collection, thermoregulation history after SCI, including hyperthermia or hypothermia (noninfectious or infectious), as well as the history of hyperhidrosis or hypohidrosis above or below level of lesion. Body temperature and the time of measurement are included. Details regarding the presence of any pressure ulcer and stage, location and size of the ulcer(s), date of appearance of the ulcer(s) and whether surgical treatment has been performed are included. The history of any pressure ulcer during the last 12 months is also noted.

International Spinal Cord Injury Female Sexual and Reproductive Function Basic Data Set

To create the International Spinal Cord Injury (SCI) Female Sexual and Reproductive Function Basic Data Set within the International SCI Data Sets. An international working group. The draft of the data set was developed by an international working group consisting of members appointed by the International Spinal Cord Society (ISCoS), the American Spinal Injury Association (ASIA), and a representative from the Executive Committee of the International SCI Standards and Data Sets. The data set was developed in an iterative process with review and comments by members of the Executive Committee of the International SCI Standards and Data Sets, ISCoS Scientific Committee, ASIA Board and the ISCoS Council, as well as all interested organizations and individuals. In addition, the data set was posted for 2 months at the ISCoS and ASIA websites for comments. ISCoS and ASIA approved the final version of the data set. To make the data set uniform, each variable and each response category within each variable have been specifically designed to promote the collection and reporting of comparable minimal data. Variables included in the International SCI Female Sexual and Reproductive Function Basic Data Set are as follows: date of data collection, interest in discussing sexual issues, sexual issues unrelated to spinal cord lesion, sexual dysfunction related to spinal cord lesion, psychogenic genital arousal, reflex genital arousal, orgasmic function and menstruation. Complete instruction for data collection, data sheet and training cases are available at the websites of ISCoS (http://www.iscos.org.uk) and ASIA (http://www.asia-spinalinjury.org).

International Spinal Cord Injury Male Sexual Function Basic Data Set

To create the International Spinal Cord Injury (SCI) Male Sexual Function Basic Data Set within the International SCI Data Sets. An international working group. The draft of the data set was developed by an international working group consisting of members appointed by the International Spinal Cord Society (ISCoS), the American Spinal Injury Association (ASIA) and a representative from the executive committee of the International SCI Standards and Data Sets. The data set was developed in an iterative process with review and comments by the members of the executive committee of the International SCI Standards and Data Sets, ISCoS scientific committee, ASIA Board and the ISCoS Council, as well as all the interested organizations and individuals. Next, the data set was posted for 2 months at the ISCoS and ASIA's websites for comments. ISCoS and ASIA approved the final version of the data set. To make the data set uniform, each variable and each response category within each variable have been specifically defined in a way that is designed to promote the collection and reporting of comparable minimal data. Variables included in the International SCI Male Sexual Function Basic Data Set are as follows: date of data collection, interest in discussing sexual issues, sexual issues unrelated to spinal cord lesion, sexual dysfunction related to spinal cord lesion, psychogenic erection, reflex erection, ejaculation and orgasmic function. Complete instructions for data collection, data sheet and training cases are available at the website of ISCoS (http://www.iscos.org.uk) and ASIA (http://www.asia-spinalinjury.org).

International spinal cord injury cardiovascular function basic data set

To create an International Spinal Cord Injury (SCI) Cardiovascular Function Basic Data Set within the framework of the International SCI Data Sets. An international working group. The draft of the data set was developed by a working group comprising members appointed by the American Spinal Injury Association (ASIA), the International Spinal Cord Society (ISCoS) and a representative of the executive committee of the International SCI Standards and Data Sets. The final version of the data set was developed after review by members of the executive committee of the International SCI Standards and Data Sets, the ISCoS scientific committee, ASIA board, relevant and interested international organizations and societies, individual persons with specific interest and the ISCoS Council. To make the data set uniform, each variable and each response category within each variable have been specifically defined in a way that is designed to promote the collection and reporting of comparable minimal data. The variables included in the International SCI Cardiovascular Function Basic Data Set include the following items: date of data collection, cardiovascular history before the spinal cord lesion, events related to cardiovascular function after the spinal cord lesion, cardiovascular function after the spinal cord lesion, medications affecting cardiovascular function on the day of examination; and objective measures of cardiovascular functions, including time of examination, position of examination, pulse and blood pressure. The complete instructions for data collection and the data sheet itself are freely available on the websites of both ISCoS (http://www.iscos.org.uk) and ASIA (http://www.asia-spinalinjury.org).

International Urinary Tract Imaging Basic Spinal Cord Injury Data Set

To create an International Urinary Tract Imaging Basic Spinal Cord Injury (SCI) Data Set within the framework of the International SCI Data Sets. An international working group. The draft of the Data Set was developed by a working group comprising members appointed by the Neurourology Committee of the International Continence Society, the European Association of Urology, the American Spinal Injury Association (ASIA), the International Spinal Cord Society (ISCoS) and a representative of the Executive Committee of the International SCI Standards and Data Sets. The final version of the Data Set was developed after review and comments by members of the Executive Committee of the International SCI Standards and Data Sets, the ISCoS Scientific Committee, ASIA Board, relevant and interested international organizations and societies (around 40), individual persons with specific expertise and the ISCoS Council. Endorsement of the Data Sets by relevant organizations and societies will be obtained. To make the Data Set uniform, each variable and each response category within each variable have been specifically defined in a way that is designed to promote the collection and reporting of comparable minimal data. The variables included in the International Urinary Tract Imaging Basic SCI Data Set are the results obtained using the following investigations: intravenous pyelography or computer tomography urogram or ultrasound, X-ray, renography, clearance, cystogram, voiding cystogram or micturition cystourogram or videourodynamics. The complete instructions for data collection and the data sheet itself are freely available on the websites of both ISCoS (http://www.iscos.org.uk) and ASIA (http://www.asia-spinalinjury.org).

International bowel function extended spinal cord injury data set

International expert working group. To develop an International Bowel Function Extended Spinal Cord Injury (SCI) Data Set presenting a standardized format for the collection and reporting of an extended amount of information on bowel function. Working group consisting of members appointed by the American Spinal Injury Association (ASIA) and the International Spinal Cord Society (ISCoS). A draft prepared by the working group was reviewed by Executive Committee of the International SCI Standards and Data Sets and later by the ISCoS Scientific Committee and the ASIA Board. Relevant and interested scientific and professional organizations and societies (around 40) were also invited to review the data set and it was posted on the ISCoS and ASIA websites for 3 months to allow comments and suggestions. The ISCoS Scientific Committee, ISCoS Council and ASIA Board received the data set for final review and approval. The International Bowel Function Basic SCI Data Set includes 26 items providing a thorough description of bowel-related symptoms as well as clinical assessment of anal sphincter function and description of total gastrointestinal or segmental colorectal transit times. An International Bowel Function Extended SCI Data Set has been developed. This Data Set is mainly for research purposes and it should be used in combination with the information obtained from the International SCI Core Data Set and the International Bowel Function Basic SCI Data Set.

International bowel function basic spinal cord injury data set

International expert working group. To develop an International Bowel Function Basic Spinal Cord Injury (SCI) Data Set presenting a standardized format for the collection and reporting of a minimal amount of information on bowel function in daily practice or in research. Working group consisting of members appointed by the American Spinal Injury Association (ASIA) and the International Spinal Cord Society (ISCoS). A draft prepared by the working group was reviewed by Executive Committee of the International SCI Standards and Data Sets, and later by ISCoS Scientific Committee and the ASIA Board. Relevant and interested scientific and professional (international) organizations and societies (approximately 40) were also invited to review the data set and it was posted on the ISCoS and ASIA websites for 3 months to allow comments and suggestions. The ISCoS Scientific Committee, Council and ASIA Board received the data set for final review and approval. The International Bowel Function Basic SCI Data Set includes the following 12 items: date of data collection, gastrointestinal or anal sphincter dysfunction unrelated to SCI, surgical procedures on the gastrointestinal tract, awareness of the need to defecate, defecation method and bowel care procedures, average time required for defecation, frequency of defecation, frequency of fecal incontinence, need to wear pad or plug, medication affecting bowel function/constipating agents, oral laxatives and perianal problems. An International Bowel Function Basic SCI Data Set has been developed.

International Urodynamic Basic Spinal Cord Injury Data Set

To create the International Urodynamic Basic Spinal Cord Injury (SCI) Data Set within the framework of the International SCI Data Sets. International working group. The draft of the data set was developed by a working group consisting of members appointed by the Neurourology Committee of the International Continence Society, the European Association of Urology, the American Spinal Injury Association (ASIA), the International Spinal Cord Society (ISCoS) and a representative of the Executive Committee of the International SCI Standards and Data Sets. The final version of the data set was developed after review and comments by members of the Executive Committee of the International SCI Standards and Data Sets, the ISCoS Scientific Committee, ASIA Board, relevant and interested (international) organizations and societies (around 40) and persons and the ISCoS Council. Endorsement of the data set by relevant organizations and societies will be obtained. To make the data set uniform, each variable and each response category within each variable have been specifically defined in a way that is designed to promote the collection and reporting of comparable minimal data. Variables included in the International Urodynamic Basic SCI Data Set are date of data collection, bladder sensation during filling cystometry, detrusor function, compliance during filing cystometry, function during voiding, detrusor leak point pressure, maximum detrusor pressure, cystometric bladder capacity and post-void residual volume.

International lower urinary tract function basic spinal cord injury data set

To create the International Lower Urinary Tract Function Basic Spinal Cord Injury (SCI) Data Set within the framework of the International SCI Data Sets. International working group. The draft of the Data Set was developed by a working group consisting of the members appointed by the International Continence Society, the European Association of Urology, the American Spinal Injury Association (ASIA), the International Spinal Cord Society (ISCoS) and a representative of the Executive Committee of the International SCI Standards and Data Sets. The final version of the Data Set was developed after review and comments by the members of the Executive Committee of the International SCI Standards and Data Sets, the ISCoS Scientific Committee, ASIA Board, relevant and interested (international) organizations and societies (around 40) and persons, and the ISCoS Council. Endorsement of the Data Set by relevant organizations and societies will be obtained. To make the Data Set uniform, each variable and each response category within each variable have been specifically defined in a way that is designed to promote the collection and reporting of comparable minimal data. Variables included in the International Lower Urinary Tract Function Basic SCI Data Set are as follows: date of data collection, urinary tract impairment unrelated to spinal cord lesion, awareness of the need to empty the bladder, bladder emptying, average number of voluntary bladder emptyings per day during the last week, incontinence within the last 3 months, collecting appliances for urinary incontinence, any drugs for the urinary tract within the last year, surgical procedures on the urinary tract and any change in urinary symptoms within the last year. Complete instruction for data collection, data sheet and training cases available at the website of ISCoS (www.iscos.org.uk) and ASIA (www.asia-spinalinjury.org).