International Spinal Cord Society Research Articles

Www.elearnSCI.org: A Web-based Teaching and Educational Resource

The management of spinal cord injury (SCI) is a complex challenge necessitating skillful, coordinated input from a multi-disciplinary team of health professionals from the point of injury through lifetime follow-up. Unfortunately, and particularly in low resource countries, rural and remote areas, there is limited access to up-to-date training and learning resources. To address this need, the International Spinal Cord Society (ISCoS) developed www.elearnSCI.org – a web-based educational resource. The aim of this resource is to increase understanding, skills and knowledge about the comprehensive management of SCI.

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).

Www.elearnSCI.org: a global educational initiative of ISCoS

To develop a web-based educational resource for health professionals responsible for the management of spinal cord injury (SCI). The resource:www.elearnSCI.org is comprised of seven learning modules, each subdivided into various submodules. Six of the seven modules address the educational needs of all disciplines involved in comprehensive SCI management. The seventh module addresses prevention of SCI. Each submodule includes an overview, activities, self-assessment questions and references. Three hundred and thirty-two experts from The International Spinal Cord Society (ISCoS) and various affiliated societies from 36 countries were involved in developing the resource through 28 subcommittees. The content of each submodule was reviewed and approved by the Education and Scientific Committees of ISCoS and finally by an Editorial Committee of 23 experts. The content of the learning modules is relevant to students and to new as well as experienced SCI healthcare professionals. The content is applicable globally, has received consumer input and is available at no cost. The material is presented on a website underpinned by a sophisticated content-management system, which allows easy maintenance and ready update of all the content. The resource conforms to key principles of e-learning, including appropriateness of curriculum, engagement of learners, innovative approaches, effective learning, ease of use, inclusion, assessment, coherence, consistency, transparency, cost effectiveness and feedback. www.elearnSCI.org provides a cost effective way of training healthcare professionals that goes beyond the textbook and traditional face-to-face teaching.

The global map for traumatic spinal cord injury epidemiology: update 2011, global incidence rate

Literature review. Update the global maps for traumatic spinal cord injury (TSCI) and incorporate methods for extrapolating incidence data. An initiative of the International Spinal Cord Society (ISCoS) Prevention Committee. A search of Medline/Embase was performed (1959-Jun/30/2011). Enhancement of data-quality 'zones' including individual data-ranking as well as integrating regression techniques to provide a platform for continued regional and global estimates. A global-incident rate (2007) is estimated at 23 TSCI cases per million (179,312 cases per annum). Regional data are available from North America (40 per million), Western Europe (16 per million) and Australia (15 per million). Extrapolated regional data are available for Asia-Central (25 per million), Asia-South (21 per million), Caribbean (19 per million), Latin America, Andean (19 per million), Latin America, Central (24 per million), Latin America-Southern (25 per million), Sub-Saharan Africa-Central (29 per million), Sub-Saharan Africa-East (21 per million). It is estimated that globally in 2007, there would have been between 133 and 226 thousand incident cases of TSCI from accidents and violence. The proportion of TSCI from land transport is decreasing/stable in developed but increasing in developing countries due to trends in transport mode (transition to motorised transport), poor infrastructure and regulatory challenges. TSCIs from low falls in the elderly are increasing in developed countries with ageing populations. In some developing countries low falls, resulting in TSCI occur while carrying heavy loads on the head in young people. In developing countries high-falls feature, commonly from trees, balconies, flat roofs and construction sites. TSCI is also due to crush-injuries, diving and violence. The online global maps now inform an extrapolative statistical model, which estimates incidence for areas with insufficient TSCI data. The accuracy of this methodology will be improved through the use of prospective, standardised-data registries.

Global maps of non-traumatic spinal cord injury epidemiology: towards a living data repository

Literature review. Globally map non-traumatic spinal cord injury (NTSCI) incidence, prevalence, survival, level of injury and aetiology. Propose a research framework for NTSCI prevention and launch a repository of NTSCI data. Initiative of the International Spinal Cord Society Prevention Committee. Literature search of Medline and Embase (1959-June 2011). Relevant articles in any language regarding adults with NTSCI were included. Stratification of information about incidence and prevalence into green/yellow/orange/red data quality 'zones' and comparisons between World Health Organisation (WHO) regions and countries. Three hundred and seventy-seven abstracts reviewed--45 of these from 24 countries in 12 of the 21 WHO global regions had relevant information. Only one publication had survival data. Prevalence data for NTSCI existed for only two countries, India (prevalence of 2,310/million population, Kashmir region) and Canada (prevalence of 1,120/million population). The incidence rates for WHO regions were: Asia Pacific, high income 20/million population/year; Australasia (26/million population/year); Western Europe median of 6/million population/year; North America, high income median 76/million population/year (based on poor-quality studies); and Oceania 9/million population/year. Developed countries tended to have a higher proportion of cases with degenerative conditions and tumours. Developing countries, in comparison, tended to have a higher proportion of infections, particularly tuberculosis and HIV, although a number also reported tumours as a major cause. Insufficient survival, prevalence and incidence data are a predominant finding of this review. The piecemeal approach to epidemiological reporting of NTSCI, particularly failing to include sound regional population denominators, has exhausted its utility. Minimum data collection standards are required.

Clinical trials in spinal cord injury: lessons learned on the path to translation. The 2011 International Spinal Cord Society Sir Ludwig Guttmann Lecture

After three decades of clinical research on interventions to improve neurological outcomes in persons with spinal cord injury (SCI), the promise of preclinical discovery has yet to be translated into a consensus standard of care treatment. Nonetheless, SCI researchers remain hopeful that advances in preclinical discovery coupled with improved clinical trial performance will yield effective restorative treatment. This historical review of key studies in SCI over the past 30 years illustrates the progress that has been achieved in establishing a high standard in the conduct of clinical research while providing important lessons for improving trial design, conduct and reporting. Through application of these lessons, the performance of SCI trials can be improved, thereby shortening the pathway to successful translation and the development of effective therapies.

The Sir Ludwig Guttmann Lecture 2012: the contribution of Stoke Mandeville Hospital to spinal cord injuries

This Ludwig Guttmann Lecture was presented at the 2012 meeting of the International Spinal Cord Society in London. It describes the contribution of Stoke Mandeville Hospital to the field of spinal cord injuries. Dr Ludwig Guttmann started the Spinal Unit at Stoke Mandeville Hospital in 1944 and introduced a novel, comprehensive method of care, which included early admission, prevention and treatment of spinal cord injury related complications, active rehabilitation and social reintegration. Soon a dedicated specialist team was assembled and training of visitors was encouraged, some of whom went on to start their own spinal units. Research went hand in hand with clinical work, and over the years more than 500 scientific contributions from Stoke Mandeville have been published in peer reviewed journals and books. Guttmann introduced sport as a means of physical therapy, which soon lead to organised Stoke Mandeville Games, first national in 1948, then international in 1952 and finally the Paralympic Games in 1960. Stoke Mandeville is regarded as the birthplace of the Paralympic movement, and Guttmann was knighted in 1966. Stoke Mandeville is also the birthplace of the International Medical Society of Paraplegia, later International Spinal Cord Society, which was formed during the International Stoke Mandeville Games in 1961, and of the Society's medical journal Paraplegia, later Spinal Cord, first published in 1963. Guttmann's followers have continued his philosophy and, with some new developments and advances, the present day National Spinal Injuries Centre at Stoke Mandeville Hospital provides comprehensive, multidisciplinary acute care, rehabilitation and life-long follow-up for patient with spinal cord injuries of all ages.

International spinal cord injury musculoskeletal basic data set

To develop an International Spinal Cord Injury (SCI) Musculoskeletal Basic Data Set as part of the International SCI Data Sets to facilitate consistent collection and reporting of basic musculoskeletal findings in the SCI population. International. A first draft of an SCI Musculoskeletal Basic Data Set was developed by an international working group. This was reviewed by many different organizations, societies and individuals over 9 months. Revised versions were created successively. The final version of the International SCI Musculoskeletal Basic Data Set contains questions on neuro-musculoskeletal history before spinal cord lesion; presence of spasticity/spasms; treatment for spasticity within the last 4 weeks; fracture(s) since the spinal cord lesion; heterotopic ossification; contracture; the location of degenerative neuromuscular and skeletal changes due to overuse after SCI; SCI-related neuromuscular scoliosis; the method(s) used to determine the presence of neuromuscular scoliosis; surgical treatment of the scoliosis; other musculoskeletal problems; if any of the musculoskeletal challenges above interfere with activities of daily living. Instructions for data collection and the data collection form are freely available on the International Spinal Cord Society (ISCoS) website (www.iscos.org.uk). The International SCI Musculoskeletal Basic Data Set will facilitate consistent collection and reporting of basic musculoskeletal findings in the SCI population.

Introducing the revised International Standards on documentation of remaining Autonomic Function after SCI (ISAFSCI)

During the last decade an international community of clinicians and scientists in the area of spinal cord injury (SCI) medicine became aware of the need to improve evaluation of autonomic function in individuals with SCI to optimize clinical management and determine efficacy of therapeutic interventions. This prompted an international collaboration between the American Spinal Injury Association (ASIA) and the International Spinal Cord Society (ISCoS) to develop the International Standards documenting the remaining autonomic functions following SCI.

International Spinal Cord Injury Spinal Column Injury Basic Data Set

Survey of expert opinion, feedback and final consensus. To describe the development of the International Spinal Cord Injury (SCI) Spinal Column Injury Basic Data Set. International working group. A committee of experts was established to select and define data elements. The data set was then disseminated to the appropriate committees and organizations for comment. All suggested revisions were considered and the final version was endorsed by both the International Spinal Cord Society (ISCoS) and the American Spinal Injury Association (ASIA). The data set consists of seven variables: (1) penetrating or blunt injury, (2) spinal column injury(ies), (3) single or multiple level spinal column injury(ies), (4) spinal column injury level number, (5) spinal column injury level, (6) disc and/or posterior ligamentous complex injury and (7) traumatic translation. All variables are coded using numbers or characters. For variables 1, 2, 3, 4, 6 and 7, response categories are assigned a numeric point score. Variable 5 assigns both characters and numbers to identify level(s) of spinal injured vertebra(e). When there are several distinct and separate levels of injury, then each one is described using variables 4 through 7. The International SCI Spinal Column Injury Basic Data Set was developed to facilitate comparisons of spinal column injury data among studies, centres and countries. This data set is part of the National Institute of Neurological Disorders and Stroke Common Data Element project, and tools are now available to assist investigators in collecting this data in their SCI clinical studies.

State of the Science Conference in Spinal Cord Injury Rehabilitation 2011: introduction

State of the Science Conference in Spinal Cord Injury Rehabilitation 2011: introduction

State of the science in spinal cord injury rehabilitation 2011: informing a new research agenda

This manuscript summarizes recommendations from the State of the Science Conference in Spinal Cord Injury Rehabilitation 2011. To develop an agenda for spinal cord injury (SCI) rehabilitation research in the next decade. Participants scheduled planning meetings and then gathered at the 2011 joint meeting of the American Spinal Injury Association and International Spinal Cord Society in Washington DC. Recommendations were made by an international, multidisciplinary team that met in large plenary sessions and breakout groups during the meeting. Recommendations are organized by conference track, including neurological and functional recovery; technology issues; aging with spinal cord injury; and employment, psychosocial and quality of life issues. A number of themes emerged across the conference tracks, including the need for improved measures of process and outcome constructs, application of qualitative and quantitative research designs, and use of contemporary statistical analytic approaches. Participants emphasized the value of collaborative research that uses the latest methods, techniques and information.

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 Pulmonary Function Basic Data Set

To develop the International Spinal Cord Injury (SCI) Pulmonary Function Basic Data Set within the framework of the International SCI Data Sets in order to facilitate consistent collection and reporting of basic bronchopulmonary findings in the SCI population. International. The SCI Pulmonary Function Data Set was developed by an international working group. The initial data set document was revised on the basis of suggestions from members of the Executive Committee of the International SCI Standards and Data Sets, the International Spinal Cord Society (ISCoS) Executive and Scientific Committees, American Spinal Injury Association (ASIA) Board, other interested organizations and societies and individual reviewers. In addition, the data set was posted for 2 months on ISCoS and ASIA websites for comments. The final International SCI Pulmonary Function Data Set contains questions on the pulmonary conditions diagnosed before spinal cord lesion,if available, to be obtained only once; smoking history; pulmonary complications and conditions after the spinal cord lesion, which may be collected at any time. These data include information on pneumonia, asthma, chronic obstructive pulmonary disease and sleep apnea. Current utilization of ventilator assistance including mechanical ventilation, diaphragmatic pacing, phrenic nerve stimulation and Bi-level positive airway pressure can be reported, as well as results from pulmonary function testing includes: forced vital capacity, forced expiratory volume in one second and peak expiratory flow. The complete instructions for data collection and the data sheet itself are freely available on the website of ISCoS (http://www.iscos.org.uk).

Reference for the 2011 revision of the international standards for neurological classification of spinal cord injury

The latest revision of the International Standards for the Neurological Classification of Spinal Cord Injury (ISNCSCI) was available in booklet format in June 2011, and is published in this issue of the Journal of Spinal Cord Medicine. The ISNCSCI were initially developed in 1982 to provide guidelines for the consistent classification of the neurological level and extent of the injury to achieve reliable data for clinical care and research studies. This revision was generated from the Standards Committee of the American Spinal Injury Association in collaboration with the International Spinal Cord Society's Education Committee. This article details and explains the updates and serves as a reference for these revisions and clarifications.

Measuring Body Structures and Body Functions from the International Classification of Functioning, Disability, and Health Perspective

The aims of this study were to provide a selection of biomedical domains based on the comprehensive International Classification of Functioning, Disability, and Health (ICF) core sets for spinal cord injury (SCI) and to present an overview of the corresponding measurement instruments. Based on the Biomedical Domain Set, the SCI literature, the International Spinal Cord Society international data sets, and the Spinal Cord Injury Rehabilitation Evidence project publications were used to derive category specifications for use in SCI research. Expert opinion was used to derive a priority selection. The same sources were used to determine candidate measurement instruments for the specification of body functions and body structures using an example, and guiding principles were applied to select the most appropriate biomedical measurement instrument(s) for use in an SCI research project. Literature searches were performed for 41 second-level ICF body functions categories and for four second-level ICF body structures categories. For some of these categories, only a few candidate measurement instruments were found with limited variation in the type of measurement instruments. An ICF-based measurement set for biomedical aspects of functioning with SCI was established. For some categories of the ICF core sets for SCI, there is a need to develop measurement instruments.

The International Spinal Cord Injury Endocrine and Metabolic Function Basic Data Set

To develop the International Spinal Cord Injury (SCI) Endocrine and Metabolic Function Basic Data Set within the framework of the International SCI Data Sets that would facilitate consistent collection and reporting of basic endocrine and metabolic findings in the SCI population. International. The International SCI Endocrine and Metabolic Function Data Set was developed by a working group. The initial data set document was revised on the basis of suggestions from members of the Executive Committee of the International SCI Standards and Data Sets, the International Spinal Cord Society (ISCoS) Executive and Scientific Committees, American Spinal Injury Association (ASIA) Board, other interested organizations and societies, and individual reviewers. In addition, the data set was posted for 2 months on ISCoS and ASIA websites for comments. The final International SCI Endocrine and Metabolic Function Data Set contains questions on the endocrine and metabolic conditions diagnosed before and after spinal cord lesion. If available, information collected before injury is to be obtained only once, whereas information after injury may be collected at any time. These data include information on diabetes mellitus, lipid disorders, osteoporosis, thyroid disease, adrenal disease, gonadal disease and pituitary disease. The question of gonadal status includes stage of sexual development and that for females also includes menopausal status. Data will be collected for body mass index and for the fasting serum lipid profile. The complete instructions for data collection and the data sheet itself are freely available on the websites of ISCoS (http://www.iscos.org.uk) and ASIA (http://www.asia-spinalinjury.org).

ISCoS–WHO collaboration. International Perspectives of Spinal Cord Injury (IPSCI) report

The objective of this study was to describe the projects, the International Spinal Cord Society (ISCoS) has in cooperation with the World Health Organization (WHO) for the benefit of individuals with spinal cord injury (SCI) worldwide. International Collaboration between ISCoS and WHO can be divided into (A) building capacity for better SCI education and prevention programs; (B) improving classification systems for use of data in SCI research, the International Classification of External Cause of Injury (ICECI), the International Classification of Diseases (ICD) and the International Classification of Functioning, Disability and Health (ICF); and (C) improving the evidence base for SCI through the report, International Perspectives on Spinal Cord Injury (IPSCI). The objectives of the IPSCI report are first to summarize information on SCI, in particular the science and epidemiology, the services, interventions and policies that are relevant and 'the lived experience' of persons with SCI across the full spectrum of life and throughout the world; second, to document all aspects of the science and experience of SCI to identify gaps between what exists and what is required; and third to make recommendations based on this evidence, with a clear perception of feasible goals and targets, that are consistent with the aspirations and goals of inclusion and full participation as expressed in the UN Convention of the Rights of Persons with Disabilities. FUTURE COOPERATION: ISCoS and WHO will continue to join forces in areas where they can make the greatest difference, especially in prevention and educational issues worldwide.

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).