International Spinal Cord Injury Data Sets 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 Data Sets in clinical practice and research

<h3>Research Objectives</h3> To give an update on the International Spinal Cord Injury (SCI) Data Sets. <h3>Design</h3> International consensus. <h3>Setting</h3> The International SCI Data Sets Committee approved by the International Spinal Cord Society and the American Spinal Injury Association. <h3>Participants</h3> Individuals with spinal cord injury of traumatic and non-traumatic etiology. <h3>Interventions</h3> Utilization of the International SCI Data Sets. <h3>Main Outcome Measures</h3> Application of the International SCI Data Sets in registries, electronic medical records, daily clinical practice, and research. <h3>Results</h3> Since the first version of the International SCI Core Data Set was published in 2006, 23 International SCI Basic Data Sets, and 6 International SCI Extended Data Sets are developed: https://www.iscos.org.uk/international-sci-data-sets. The Data Sets are developed and used by nurses, physio- and occupational therapists, psychologists, doctors, and researchers depending on the content. 24 of the Data Sets are included in the National Institute of Health (NIH), National Institute of Neurological Disorders and Stroke (NINDS), Common Data Elements (CDE): https://www.commondataelements.ninds.nih.gov/Spinal%20Cord%20Injury. Electronic Medical Records like Epic and Cerner have implemented several of the Data Sets. Likewise, International SCI Data Sets or elements from them are used in SCI-registries worldwide, e.g. US National SCI Model Systems Database, Rick Hansen SCI Registry in Canada, Austrian SCI Study – Registry, Nordic SCI Registry, Registry for all SCI centers in the Netherlands, prevention registry covering India, Nepal, Sri Lanka, Bangladesh, Malaysia, and Thailand, Iranian SCI Registry, Australia and more. Translations exist in Chinese, Dutch, Spanish, Portuguese, Italian, French, 5 Nordic languages, Persian, Korean, Hindi, etc. of one or more International SCI Data Sets, and several validity and reliability studies were performed. <h3>Conclusions</h3> Because the International SCI Data Sets are continuously updated and developed according to current evidence using an open and transparent process, where all interested parties are encouraged to participate these standardized and easy to use Data Sets have gained wide international acceptance in clinical practice and research. <h3>Author(s) Disclosures</h3> No Financial Or Non-Financial Interests To Disclose.

Translation and validation of two International Spinal Cord Injury (SCI) Data Sets-a modified process.

A descriptive design was used of a reflective process of problem solving among individuals working together to improve the process of translating. Sweden. The aim of this study was to describe a modified process for translation and validation of the International Spinal Cord Injury (SCI) Quality of Life (QoL) and Activity and Participation (A&P) Basic Data Sets from English into Swedish. The process of translation followed the Executive Committee for the International SCI Standards and Data Sets (ECSCI) recommendations. The initial translation was performed by translators. Experts in SCI were then assembled to scrutinize the translations and to reach a consensus for defining a final version. The whole process was time consuming. To save time in future translations, the start-up planning is of great importance. To identify appropriate participants with knowledge and interest to be part of the project is crucial. In addition, the consensus meetings, when scrutinizing the translated International SCI Data Sets, should be well prepared and structured. We identified a few steps that could make the process more efficient. By adding a few steps as well as defining the role of a project coordinator, we believe that future translations of the International SCI Data Sets for non-English-speaking countries could be facilitated.

Assessment of pain symptoms and quality of life using the International Spinal Cord Injury Data Sets in persons with chronic spinal cord injury

IntroductionTraumatic spinal cord injury (SCI) triggers complex changes that can negatively impact health and quality of life. The International SCI Data Sets were developed to enable more comparable data collection on the complex sequelae of SCI across studies. This should facilitate progress in mechanistic understanding and improving treatments of SCI.Study designProspective observational pilot study.ObjectivesTo collect data on pain symptoms and quality of life (QoL) in adults living with chronic SCI.SettingAcademic medical center, New York, USA.MethodsThe International SCI Basic Pain and Qol Data Sets were used to collect data from participants with chronic SCI (N = 31) at 2 study visits held 6 months apart. The QoL Data Set was also used to collect data from able-bodied persons of similar age and gender distribution (N = 28).ResultsMost participants with SCI had multiple types and locations of pain problems at both study visits, despite reported being treated for pain. At both visits, the worst pain problem type was nociceptive, followed by neuropathic, which was typically rated of higher intensity. QoL scores were significantly lower across all domains of the data set in persons with SCI than able-bodied persons. Persons with pain tended to have lower QoL scores, although this trend was not significant.ConclusionsThis study demonstrates the presence, complexity and stability of pain symptoms refractory to treatment and lower quality of life ratings in persons with chronic SCI.SponsorshipGrants from the Craig H. Neilsen Foundation, New York Empire Clinical Research Program, New York State Spinal Cord Injury Research Board.

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.

Implementation of a Standardized Dataset for Collecting Information on Patients With Spinal Cord Injury.

Background: Over the last decade, the International Spinal Cord Injury Data Sets project developed a number of International Spinal Cord Injury Data Sets (ISCIDS) that can be used to collect standardized information on patients with SCI. Objective and Methods: The aim of this article is to describe the process of translating the ISCIDS into Dutch and reaching consensus on a Dutch National SCI Data Set (NDD). The interrater reliability of the NDD and implementation of the NDD at eight rehabilitation centers with a specialty in rehabilitation after SCI in the Netherlands are described. Results: NDD was implemented successfully at all eight centers. Some adaptations were made to the ISCIDS, especially to the core data set. The reliability coefficients of the NDD items were at least sufficient (mean kappa per data set ranged between .68 and .91), and mean agreement per data set ranged from 66% to 97%. Experiences from the participating centers were mainly positive as well. The main obstacle for use was thought to be the absence of a link between the local patient files and the national database, which necessitates double data entry. Conclusion: Although the results on interrater reliability are based on a small sample size and the assessment situation is different from the normal clinical situation, this study showed the NDD to be a useful instrument to collect standardized information on patients with SCI in the Netherlands. In the future, a connection between systems or another way to centrally collect the data is recommended to prevent double data entry and to guarantee continuation of administration of the NDD.

Progress of the Dutch Spinal Cord Injury Database: Completeness of Database and Profile of Patients Admitted for Inpatient Rehabilitation in 2015.

Background: In the Dutch International Spinal Cord Injury (SCI) Data Sets project, we translated all International SCI Data Sets available in 2012 and created a Dutch SCI Database (NDD). Objective: To describe the number of included patients and completeness of the NDD, and to use the NDD to provide a profile of people with traumatic SCI (T-SCI) and non-traumatic SCI (NT-SCI) in the Netherlands. Methods: The NDD includes patients admitted for their first inpatient rehabilitation after onset of SCI to 1 of the 8 rehabilitation centers with a specialty in SCI rehabilitation in the Netherlands. Data of patients admitted in 2015 were analyzed. Results: Data for 424 patients were available at admission; for 310 of these patients (73.1%), discharge data were available. No significant differences were found between patients with and without data at discharge. Data were nearly complete (>90%) for lower urinary tract, bowel, pain, and skin. Data on sexual function has the lowest completion rate. Complete neurological and functional data were available for 41.7% and 38%, respectively. Most patients were male (63.4%), had NT-SCI (65.5%), and had incomplete SCI (58.4% D). Patients with T-SCI differed from patients with NT-SCI on most characteristics, and they stayed considerably longer in the rehabilitation center (112 days vs 65 days, p < .001). Place of discharge was not different between both groups. Conclusion: With the NDD, we collect important data on the majority of Dutch SCI patients, although much work needs to be done to improve the completeness of the data collection.

Facilitators and Barriers to International Collaboration in Spinal Cord Injury: Results from a Survey of Clinicians and Researchers.

International collaboration in spinal cord injury (SCI) research is necessary to overcome the challenges often encountered by clinicians and researchers, including participant recruitment, high cost, and the need for specialized expertise. However, international collaboration poses its own obstacles. The objective of this study was to conduct an international online survey to assess barriers and facilitators to international SCI clinical research, potential initiatives to facilitate future collaborations, and the use of SCI-specific data sets and standards. Results were analyzed using descriptive statistics. Of 364 total respondents, 213 completed the survey, with the majority of these participants based in North America (38%), Asia (22%), Europe (18%), and Oceania (16%). Over half had more than 10 years of experience in SCI research or clinical practice (57%) and 60% had previous experience with international collaborations. Funding was identified as a top barrier (82%), a facilitator (93%), and a proposed future initiative (97%). Communication and technology were also identified as strong facilitators and proposed future initiatives. The International Standards for Neurological Classification of SCI were used by 69% of participants, the International Standards to document remaining Autonomic Function after SCI by 13% of participants, and the International SCI Data Sets by 45% of participants. As the need for international collaborations in SCI research increases, it is important to identify how clinicians and researchers can be supported by SCI consumer and professional organizations, funders, and networks. Furthermore, unique solutions to overcome modifiable barriers and creation of new facilitators are also needed.

Relevance of the international spinal cord injury basic data sets to youth: an Inter-Professional review with recommendations.

Mixed methods, using the Modified Delphi Technique and Expert Panel Review. To evaluate the utility and relevance of the International Spinal Cord Injury (SCI) Core and Basic Data Sets for children and youth with SCI. International. Via 20 electronic surveys, an interprofessional sample of healthcare professionals with pediatric SCI experience participated in an iterative critical review of the International SCI Data Sets, and submitted suggestions for modifications for use with four pediatric age groups. A panel of 5 experts scrutinized the utility of all data sets, correlated any modifications with the developing National Institute of Neurological Disorders and Stroke (NINDS) pediatric SCI Common Data Elements (CDE) and distributed final recommendations for modifications required to the adult data sets to the International SCI Data Set Committee and the associated Working Groups. Two International SCI Data Sets were considered relevant and appropriate for use with children without any changes. Three were considered not appropriate or applicable for use with children, regardless of age. Recommendations were made for five data sets to enhance their relevance and applicability to children across the age groups, and recommendations for seven data sets were specific to infants and younger children. The results of this critical review are significant in that substantive recommendations to align the International SCI Core and Basic Data Sets to pediatric practice were made. This project was funded by the Rick Hansen Institute Grant# 2015-27.

Standardization of Data for Clinical Use and Research in Spinal Cord Injury

Increased survival after spinal cord injury (SCI) worldwide has enhanced the need for quality data that can be compared and shared between centers, countries, as well as across research studies, to better understand how best to prevent and treat SCI. Such data should be standardized and be able to be uniformly collected at any SCI center or within any SCI study. Standardization will make it possible to collect information from larger SCI populations for multi-center research studies. With this aim, the international SCI community has obtained consensus regarding the best available data and measures for use in SCI clinical practice and research. Reporting of SCI data is likewise standardized. Data elements are continuously updated and developed using an open and transparent process. There are ongoing internal, as well as external review processes, where all interested parties are encouraged to participate. The purpose of this review paper is to provide an overview of the initiatives to standardize data including the International Spinal Cord Society’s International SCI Data Sets and the National Institutes of Health, National Institute of Neurological Disorders and Stroke Common Data Elements Project within SCI and discuss future opportunities.

Common data elements for spinal cord injury clinical research: a National Institute for Neurological Disorders and Stroke project.

To develop a comprehensive set of common data elements (CDEs), data definitions, case report forms and guidelines for use in spinal cord injury (SCI) clinical research, as part of the CDE project at the National Institute of Neurological Disorders and Stroke (NINDS) of the US National Institutes of Health. International Working Groups. Nine working groups composed of international experts reviewed existing CDEs and instruments, created new elements when needed and provided recommendations for SCI clinical research. The project was carried out in collaboration with and cross-referenced to development of the International Spinal Cord Society (ISCoS) International SCI Data Sets. The recommendations were compiled, subjected to internal review and posted online for external public comment. The final version was reviewed by all working groups and the NINDS CDE team before release. The NINDS SCI CDEs and supporting documents are publically available on the NINDS CDE website and the ISCoS website. The CDEs span the continuum of SCI care and the full range of domains of the International Classification of Functioning, Disability and Health. Widespread use of CDEs can facilitate SCI clinical research and trial design, data sharing and retrospective analyses. Continued international collaboration will enable consistent data collection and reporting, and will help ensure that the data elements are updated, reviewed and broadcast as additional evidence is obtained.

International spinal cord injury upper extremity basic data set.

To develop an International Spinal Cord Injury (SCI) Upper Extremity Basic Data Set as part of the International SCI Data Sets, which facilitates consistent collection and reporting of basic upper extremity findings in the SCI population. International. A first draft of a SCI Upper Extremity Data Set was developed by an international working group. This was reviewed by many different organisations, societies and individuals over several months. A final version was created. The final version of the International SCI Upper Extremity Data Set contains variables related to basic hand-upper extremity function, use of assistive devices, SCI-related complications to upper extremity function and upper extremity/hand reconstructive surgery. Instructions for data collection and the data collection form are freely available on the ISCoS website (www.iscos.org.uk). The International SCI Upper Extremity Basic Data Set will facilitate consistent collection and reporting of basic upper extremity findings in the SCI population.

The International Spinal Cord Injury Pain Basic Data Set (version 2.0)

To revise the International Spinal Cord Injury Pain Basic Data Set (ISCIPBDS) based on new developments in the field and on suggestions from the spinal cord injury (SCI) and pain clinical and research community. International. The ISCIPBDS working group evaluated suggestions regarding the utility of the ISCIPBDS and made modifications in response to these and to significant developments in the field. The revised ISCIPBDS (version 2.0) was reviewed by members of the Executive Committee of the International SCI Standards and Data Sets, the International Spinal Cord Society (ISCoS) Executive and Scientific Committees, the American Spinal Injury Association and American Pain Society Boards and the Neuropathic Pain Special Interest Group of the International Association for the Study of Pain, individual reviewers and societies and the ISCoS Council. The ISCIPBDS (version 2.0) is significantly shortened but still contains clinically relevant core questions concerning SCI-related pain. The revisions include an updated SCI pain classification, omission of three questions regarding temporal pain pattern and three pain interference questions. The remaining three pain interference questions concern perceived interference with activities, mood and sleep for overall pain rather than for individual pain problems and are scored on a 0 to 10 scale.

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 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.

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).

Using the Spinal Cord Injury Common Data Elements

International Spinal Cord Injury (SCI) Data Sets include core, basic, and extended data sets. To date, 13 data sets have been published on the Web site of the International Spinal Cord Injury Society (ISCoS; www.iscos.org.uk), and several more are forthcoming. The data sets are constituted of data elements, which may be appropriate to use in trials conducted to test novel therapeutic candidates including neuroprotective drugs, various cell types, and rehabilitative strategies and devices. The National Institute of Neurological Disorders and Stroke (NINDS), the National Institutes of Health (NIH), embarked on a Common Data Element (CDE) Project 5 years ago. The mission of the NINDS CDE Project is to develop data standards for clinical research. The NINDS CDE team has since developed variable names and database structures for the International SCI Data Sets (ie, the SCI CDEs; http://www.commondataelements.ninds.nih.gov/SCI.aspx). Dataset variable names and database structure are exemplified with the International SCI Core Data Set and the International SCI Cardiovascular Function Basic Data Set. The consistency of the data sets and the CDE format may improve the ability to transfer critical medical information electronically from one center to another. The goals of the SCI CDE initiative are to increase the efficiency and effectiveness of clinical research studies and clinical treatment, increase data quality, facilitate data sharing, and help educate new clinical investigators. Pilot testing the SCI CDEs is an important step to ensure the SCI CDE effort achieves its goals.

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).