International Spinal Cord Injury Data Sets

To develop consistent variable names and a common database structure for the data elements in the International Spinal Cord Injury (SCI) Data Sets. National Institute of Neurological Disorders and Stroke (NINDS) Common Data Elements (CDE) Project and The Executive Committee of the International SCI Standards and Data Sets committees (ECSCI). The NINDS CDE team creates a variable name for each defined data element in the various International SCI Data Sets. Members of the ECSCI review these in an iterative process to make the variable names logical and consistent across the data sets. Following this process, the working group for the particular data set reviews the variable names, and further revisions and adjustments may be made. In addition, a database structure for each data set is developed allowing data to be stored in a uniform way in databases to promote sharing data from different studies. The International SCI Data Sets variable names and database specifications will be available through the web sites of the International Spinal Cord Society (http://www.iscos.org.uk), the American Spinal Injury Association (http://www.asia-spinalinjury.org) and the NINDS CDE project web site (http://www.CommonDataElements.ninds.nih.gov). This process will continue as additional International SCI Data Sets fulfill the requirements of the development and approval process and are ready for implementation.

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.

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).

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.

Objective To observe the clinical efficacy of screwing via the paraspinal muscle approach plus single-segment laminectomy decompression via the dorsomedian approach for thoracolumbar fractures complicated with spinal cord injury. Methods From February 2013 to September 2015, 21 patients with thoracolumbar fracture plus spinal cord injury were treated at our department. They were 15 men and 6 women, aged from 20 to 54 years (average, 33.2 years). The injury was located at T11 in 2 cases, at T12 in 6, at T12 and L1 in one, at L1 in 7 and at L2 in 5; the injury was rated as grade A in one case, grade B in 3 cases, grade C in 8 and grade D in 9 according to the American Spinal Injury Association (ASIA) grading system. Al the patients were treated by screwing via the paraspinal muscle approach followed by single-segment laminectomy decompression via the dorsomedian approach. Results The operation time averaged 116.1+24.5 minutes and the amount of bleeding 580.7+80.8 mL. At 3 days after surgery and the final follow-up, their visual analogue scale (VAS) score, anterior vertebral height and cobb angle were significantly improved in comparison with the preoperative values(P< 0.05). At the final follow-up, their Japanese Orthopaedic Association (JOA) the score were also significantly better than the preoperative one (P< 0.05), giving 12 excellent cases, 6 good ones and 3 fair ones. Their ASIA grading at the final follow-up showed one case of grade B, 2 cases of grade C, 6 cases of grade D and 12 cases of grade E. Conclusion Treatment of thoracolumbar fractures complicated with spinal cord injury by crewing via the paraspinal muscle approach plus single-segment laminectomy decompression via the dorsomedian approach is a good way due to limited invasion, less bleeding, simple operation, excellent reduction, reliable fixation and rapid recovery. Key words: Spinal fractures; Fracture fixation, internal; Bone nails; Paraspinal muscle approach; Median approach

Objective To investigate the therapeutic effects of electromyography biofeedback (EMGBF) on motor and psychological function in patients with spinal cord injury (SCI).Methods Seventy SCI patients were randomly divided into research and control groups with 35 patients in each.In addition to conventional rehabilitation,the patients in the research group received EMGBF training while those in the control group were treated with medium frequency electrotherapy.To evaluate the patients' self confidence and motor function of their paralyzed limbs,Rosenberg's self-esteem scale (RSES) and American Spinal Injury Association (ASIA) locomotor function scoring were performed before and six weeks after the interventions in both groups of patients.The changes of EMG of the quadriceps,hamstring and anterior tibial muscles of both groups in maximum contraction were also observed before and six weeks after the interventions.Results There were no significant differences in the RSES scores or ASIA locomotor function results between the groups before the interventions.ASIA locomotor function evaluation scores increased significantly in both groups after the interventions,with significantly better results in the research group.The RSES scores in the research group also improved significantly after the interventions,and RSES scoring and ASIA scoring were positively correlated in those patients.But no significant improvement in average RSES scores was found in the control group.The muscle contraction EMG amplitudes also increased significantly in patients of the research group after the interventions.Conclusions EMGBF training can enhance patients' self-confidence,which helps patients with SCI improve their motor functions. Key words: Spinal cord injury; Electromyographic biofeedback training; Rosenberg self-esteem scale; Medium frequency electrotherapy

Background: Multiple studies have described in general the injuries associated with mountain biking, and detailed accounts of spine injuries sustained in hockey, gymnastics, skiing, snowboarding, rugby, and paragliding have previously been published. However, no large-scale detailed assessment of mountain biking associated spinal fractures and spinal cord injuries has previously been published. Purpose: This study was undertaken to describe the patient demographics, injuries, mechanisms, treatments, outcomes, and resource requirements associated with spine injuries sustained while mountain biking. Study Design: Case series; Level of evidence, 4. Methods: Patients who were injured while mountain biking, and who were seen at a provincial spine referral center between 1995 and 2007 inclusive, with spinal cord injuries and/or spine fracture were included. A chart review was performed to obtain demographic data, and details of the injury, treatment, outcome, and resource requirements. Results: A total of 102 men and 5 women were identified for inclusion. The mean age at injury was 32.7 years (95% confidence interval 30.6, 35.0). Seventy-nine patients (73.8%) sustained cervical injuries, while the remainder sustained thoracic or lumbar injuries. Forty-three patients (40.2%) sustained a spinal cord injury. Of those with cord injuries, 18 (41.9%) were American Spinal Injury Association (ASIA) A, 5 (11.6%) were ASIA B, 10 (23.3%) ASIA C, and 10 (23.3%) ASIA D. Sixty-seven patients (62.6%) required surgical treatment. The mean length of stay in an acute hospital bed was 16.9 days (95% confidence interval 13.1, 30.0). Thirty-three patients (30.8%) required intensive care unit attention, and 31 patients (29.0%) required inpatient rehabilitation. Of the 43 patients (40.2%) seen with spinal cord injuries, 14 (32.5%) improved by 1 ASIA category, and 1 (2.3%) improved by 2 ASIA categories. Two patients remained ventilator-dependent at discharge. Conclusion: Spine fractures and spinal cord injuries caused by mountain biking accidents typically affect young, male, recreational riders. The medical, personal, and societal costs of these injuries are high. Injury prevention should remain a primary goal, and further research is necessary to explore the utility of educational programs, and the effect of helmets and other protective gear on spine injuries sustained while mountain biking.

Many individuals with spinal cord injury (SCI) do not regain their ability to walk, even though it is a primary goal of rehabilitation. Mammals with thoracic spinal cord transection can relearn to step with their hind limbs on a treadmill when trained with sensory input associated with stepping. If humans have similar neural mechanisms for locomotion, then providing comparable training may promote locomotor recovery after SCI. We used locomotor training designed to provide sensory information associated with locomotion to improve stepping and walking in adults after SCI. Four adults with SCIs, with a mean postinjury time of 6 months, received locomotor training. Based on the American Spinal Injury Association (ASIA) Impairment Scale and neurological classification standards, subject 1 had a T5 injury classified as ASIA A, subject 2 had a T5 injury classified as ASIA C, subject 3 had a C6 injury classified as ASIA D, and subject 4 had a T9 injury classified as ASIA D. All subjects improved their stepping on a treadmill. One subject achieved overground walking, and 2 subjects improved their overground walking. Locomotor training using the response of the human spinal cord to sensory information related to locomotion may improve the potential recovery of walking after SCI.

BACKGROUNDRapid diagnosis to facilitate urgent intervention is critical for treatment of acute spinal cord injury (SCI). We hypothesized that a multi-analyte blood biomarker would support point-of-care SCI diagnosis, correlate with injury severity, and predict long-term neurologic outcomes.METHODSDroplet digital PCR (ddPCR) assays were designed to amplify differentially hypomethylated genomic loci in spinal cord tissue. An optimized ddPCR assay was applied to cell-free DNA (cfDNA) from plasma samples collected from prospectively enrolled acute SCI patients. Targeted proteomic profiling was also performed. Spinal cord-derived cfDNA and plasma proteins were tested for their association with SCI and ability to predict conversion in American Spinal Injury Association (ASIA) score at 6 months.RESULTSA bespoke ddPCR assay detected spinal cord-derived cfDNA in plasma of 50 patients with acute SCI (AUC: 0.89, 95% CI 0.83-0.95, P < 0.0001). Levels of cfDNA were highest in patients with the most severe injury, i.e., ASIA A, compared with those with ASIA B (P = 0.04), ASIA C (P = 0.009), and ASIA D injuries (P < 0.001). Dimensionality reduction identified 4 candidate proteins (FABP3, REST, IL-6, NF-H) that were integrated with spinal cord-derived cfDNA to derive the Spinal Cord Injury Index (SCII), which has high sensitivity and specificity for SCI diagnosis (AUC: 0.91, 95% CI 0.82-0.99, P < 0.0001), correlates with injury severity (P < 0.0001), and predicts 6-month neurologic improvement (AUC: 0.77, 95% CI 0.61-0.93, P = 0.006).CONCLUSIONThe detection of spinal cord-derived cfDNA and plasma protein alterations as part of a multi-analyte blood test can inform SCI diagnosis and prognosis.FUNDINGNorth American Spine Society Young Investigator Award; Morton Cure Paralysis Fund.

Retrospective. With approximately 10,000 new spinal cord injury (SCI) patients in the United States each year, predicting public health outcomes is an important public health concern. Combining all regions of the spine in SCI trials may be misleading if the lumbar and sacral regions (conus) have a neurologic improvement at different rates than the thoracic or thoracolumbar spinal cord. Over a 10-year period between January 1995 to 2005, 1746 consecutive spinal injured patients were seen, evaluated, and treated through a level 1 trauma referral center. A retrospective analysis was performed on 150 patients meeting the criteria of T4 to S5 injury, excluding gunshot wounds. One-year follow-up data were available on 95 of these patients. Contingency table analyses (chi-squared statistics) and multivariate logistic regression. Variables of interest included level of injury, initial American Spinal Injury Association (ASIA), age, race, and etiology. A total of 92.9% of lumbar (conus) patients neurologically improved one ASIA level or more compared with 22.4% of thoracic or thoracolumbar spinal cord-injured patients. Only 7.7% of ASIA A patients showed neurologic improvement, compared with 95.2% of ASIA D patients; ASIA B patients demonstrated a 66.7% improvement rate, whereas ASIA C had a 84.6% improvement rate. When the two effects were considered jointly in a multivariate analysis, ASIA A and thoracic/thoracolumbar patients had only a 4.1% rate of improvement, compared with 96% for lumbar (conus) and incomplete patients (ASIA B-D) and 66.7% to 72.2% for the rest of the patients. All of these relationships were significant to P < 0.001 (chi-square test). There was no link to age or gender, and race and etiology were secondary to region and severity of injury. Thoracic (T4-T9) SCIs have the least potential for neurologic improvement. Thoracolumbar (T10-T12) and lumbar (conus) spinal cord have a greater neurologic improvement rate, which might be related to a greater proportion of lower motor neurons. Thus, defining the exact region of injury and potential for neurologic improvement should be considered in future clinical trial design. Combining all anatomic regions of the spine in SCI trials may be misleading if different regions have neurologic improvement at different rates. Over a ten-year period, 95 complete thoracic/thoracolumbar SCI patients had only a 4.1% rate of neurologic improvement, compared with 96.0% for incomplete lumbar (conus) patients and 66.7% to 72.2% for all others.

Functional outcome following spinal cord injury: Significance of motor-evoked potentials and ASIA scores

Spinal Cord Injury (SCI) can impact sexual function negatively, and although most people continue to be sexually active post-injury, they often report decreased satisfaction in various aspects of sexual life. To gain insight into the sexual experience and functioning of people assigned female at birth (AFAB) with a SCI. This study is part of an international observational questionnaire examining the reproductive health outcomes of individuals AFAB with SCI. The questionnaire was distributed to SCI organizations and support groups in 33 countries in four languages between 2019 and 2021. A total of 557 individuals AFAB with SCI, between the ages of 18 and 50, who completed the sexual health questions were included in this analysis. Scores of Female Sexual Function Index (FSFI-6) in relation to the severity of the SCI based on the American Spinal Injury Association (ASIA) impairment scale, level, and duration of SCI. Nearly 65% (170/263) of the study population within 10years of injury had sexual dysfunction (SD) (FSFI-6 score less than or equal to 19), and participants with ASIA A had the most dysfunction (Mean score 15.95 + 7.52). Interestingly, although half of the study population scores as experiencing SD, only one-third describe SD as a concern associated with SCI. Though most of the changes were of a physical nature (inability to orgasm, pain during penetration, spasticity, barriers related to bowel/bladder problems and episodes of autonomic dysreflexia), psychosocial factors like the presence of concomitant anxiety/depression and sexual violence from a partner affected their sexual lives adversely. We attempt to elucidate the strategies adopted to improve sexual satisfaction that can help professionals involved in the SCI rehabilitative process. Our results provide insight into the degree of SD, factors impacting sexual satisfaction and areas which need to be emphasized during the rehabilitation process of people AFAB with SCI. This study is one of the largest of its kind, attempting to understand sexual functioning and factors impacting the sexual life of people AFAB post-SCI using a standardized tool, the FSFI score. As a voluntary survey, those who responded may not be fully representative of the population. Sexual health is an essential component of rehabilitation for individuals AFAB with SCI. Enhancing their sexual satisfaction requires a comprehensive approach that considers their physical, psychological and interpersonal circumstances.

Individuals with spinal cord injury (SCI) are prone to orthostatic hypotension (OH). We aimed to develop a simple bedside test to evaluate autonomic control following chronic SCI, and to identify those most at risk of OH and cardiovascular dysfunction. We studied 14 subjects with cervical SCI, 11 with thoracic SCI, and 17 able-bodied controls. We continuously recorded heart rate (HR; ECG) and beat-to-beat systolic (SAP), diastolic (DAP) and mean (MAP) arterial pressures (Finometer) while supine, and following the passive assumption of an upright seated position. Stroke volume (SV), cardiac output (CO), and total peripheral resistance (TPR) were calculated. Plasma catecholamines were determined. Motor and sensory loss was assessed using the American Spinal Injury Association (ASIA) impairment scale. Autonomic pathways were assessed from sympathetic skin responses (SSR). Cervical SCI subjects had lower supine HR, SAP, and noradrenaline levels than thoracic SCI and controls (p < 0.05), and lower DAP and MAP than controls (p < 0.05). When upright, HR increased in all groups (p < 0.05); SAP, DAP, and MAP increased (p < 0.01) in thoracic SCI and controls, but not in cervical SCI. Cervical SCI had larger postural falls in SV (p < 0.05) and CO, with smaller increases in TPR than the other two groups. Upright catecholamine levels were lower in cervical SCI (p < 0.05) than thoracic SCI and controls. Completeness of SCI assessed by ASIA scale did not necessarily correlate with autonomic completeness assessed by SSR. Cardiovascular control during orthostasis was impaired and OH was common in cervical SCI, but not thoracic SCI. SSR may identify those at greatest risk of orthostatic hypotension and impaired cardiovascular control. We advocate that assessments of autonomic function be included in the neurological evaluation of SCI, in addition to the ASIA assessment.

To investigate how to select an appropriate surgical approach in the management of fracture and dislocation of lower cervical spine combined spinal cord injury. The clinical data of 54 patients of lower cervical spine fracture and dislocation were retrospectively analyzed. There were 29 cases with vertebral body compressive fracture and dislocation, 7 cases with vertebral body bursting fracture and dislocation, 3 cases with unilateral facet dislocation, 15 cases with bilateral facet dislocation. All cases were associated with spinal cord injury. According to American Spinal Injury Association (ASIA) grades, 21 cases were in A grade, 5 cases in B grade, 22 cases in C grade and 6 cases in D grade. All patients had surgical reduction, decompression, stabilization and fusion, 43 cases in anterior approach and 11 cases in posterior approach. All patients were followed up in 12 to 36 months, the mean follow-up time was 18 months. There were no great vessels, trachea, esophagus or spinal cord iatrogenic injury. There were no pull-out and breakage of screws or plates. Fusion was achieved in all patients at an average of 12 weeks postoperatively. There were no pseudarthrosis or bone nonunion. Of all the patients, 96.3% were acquired completely reduction and the normal intervertebral height and lordosis were maintained. Patients with complete spinal cord had no neurologic recovery, but they felt relief from upper limb pain or numb. Incomplete spinal cord lesions improved on average 1-2 Frankel grade after surgery. For lower cervical spine fracture and dislocation, an ideal anatomy reduction can be obtained with either anterior or posterior approach surgery. It is important to select a suitable surgical approach according to different types of cervical fracture and dislocation.

The optimal management of acute spinal cord injuries remains to be defined. The authors prospectively applied resuscitation principles of volume expansion and blood pressure maintenance to 77 patients who presented with acute neurological deficits as a result of spinal cord injuries occurring from C-1 through T-12 in an effort to maintain spinal cord blood flow and prevent secondary injury. According to the Intensive Care Unit protocol, all patients were managed by using Swan-Ganz and arterial blood pressure catheters and were treated with immobilization and fracture reduction as indicated. Intravenous fluids, colloid, and vasopressors were administered as necessary to maintain mean arterial blood pressure above 85 mm Hg. Surgery was performed for decompression and stabilization, and fusion in selected cases. Sixty-four patients have been followed at least 12 months postinjury by means of detailed neurological assessments and functional ability evaluations. Sixty percent of patients with complete cervical spinal cord injuries improved at least one Frankel or American Spinal Injury Association (ASIA) grade at the last follow-up review. Thirty percent regained the ability to walk and 20% had return of bladder function 1 year postinjury. Thirty-three percent of the patients with complete thoracic spinal cord injuries improved at least one Frankel or ASIA grade. Approximately 10% of the patients regained the ability to walk and had return of bladder function. As of the 12-month follow-up review, 92% of patients demonstrated clinical improvement after sustaining incomplete cervical spinal cord injuries compared to their initial neurological status. Ninety-two percent regained the ability to walk and 88% regained bladder function. Eighty-eight percent of patients with incomplete thoracic spinal cord injuries demonstrated significant improvements in neurological function 1 year postinjury. Eighty-eight percent were able to walk and 63% had return of bladder function. The authors conclude that the enhanced neurological outcome that was observed in patients after spinal cord injury in this study was in addition to, and/or distinct from, any potential benefit provided by surgery. Early and aggressive medical management (volume resuscitation and blood pressure augmentation) of patients with acute spinal cord injuries optimizes the potential for neurological recovery after sustaining trauma.