Improving Data Quality in Neurotrauma Data Sharing: The Open Data Commons Minimal Data Standards and a Data Tool for Compliance.
The Open Data Commons (ODC) for Traumatic Brain Injury (ODC-TBI) and Spinal Cord Injury (ODC-SCI) are secure online platforms for members of the neurotrauma community to access curated, publicly available domain-specific data, and manage, share, and publish datasets with a citable DOI. Currently, preparing and uploading a dataset and its corresponding data dictionary involve multiple rounds of manual revisions to meet ODC guidelines. Here, we present the ODC Minimum Data Standards (MDS) and the ODC Data Quality App (ODCdqa), an open-source web-based tool that simplifies the revision and curation workflow. The ODCdqa allows users to automate initial data quality checks and provides immediate feedback on whether the dataset meets ODC data specifications or requires edits. All publicly available datasets on the ODC-SCI and ODC-TBI websites were passed into the ODCdqa for analysis. Exclusion criteria were: (1) did not have a data dictionary, and (2) the dataset and/or data dictionary had different headers. The aggregated results were then used to identify common areas of difficulty and inform the future directions of ODC tool development and platform. Out of the 124 publicly available ODC datasets uploaded between 2018 and September 2025, 119 were used (84 from ODC-SCI, 35 from ODC-TBI). Both ODC-SCI and ODC-TBI had a trend of reducing the number of failed checks as the platform matured over the years, and the MDS and ODCdqa were used regularly by curators and users. In summary, the ODCdqa is an automated tool that allows any user to perform initial checks to determine whether a dataset and its corresponding data dictionary are ready for upload to the ODC platform. As the ODC platform evolves, more checks and features will be added to the ODCdqa.
- Research Article
2
- 10.1097/phm.0000000000002708
- Feb 4, 2025
- American journal of physical medicine & rehabilitation
A concomitant traumatic brain injury is often seen in patients with acute traumatic spinal cord injury. Unfortunately, the exact epidemiology of concomitant traumatic brain injury-traumatic spinal cord injury remains unknown. Our objective was to determine the incidence of concomitant traumatic brain injury-traumatic spinal cord injury and identify clinical factors associated with its occurrence. A prospective cross-sectional study of 476 traumatic spinal cord injury patients was conducted. In all patients, baseline characteristics were routinely collected and the presence of a traumatic brain injury was sought prospectively by a specialized neurosurgeon using standardized diagnostic criteria based on clinical and radiological variables. Of the 476 included patients, 250 (53%) had isolated traumatic spinal cord injury and 226 (47%) had concomitant traumatic brain injury-traumatic spinal cord injury. Almost 85% of diagnosed traumatic brain injuries were mild. At the univariate level, patients with concomitant traumatic brain injury-traumatic spinal cord injury were more likely to present a history of drug/alcohol abuse ( P = 0.014), be involved in a motor vehicle accident ( P < 0.001), sustain a high energy mechanism ( P < 0.001), or present tetraplegia rather than paraplegia ( P = 0.021). These factors all remained significant at the multivariate level. A concomitant traumatic brain injury can be found in around 50% of traumatic spinal cord injury individuals. There are several clinical variables that should increase clinical suspicion of underlying traumatic brain injury and warrant further investigation to facilitate prompt identification and treatment of affected patients.
- Research Article
- 10.1227/neu.0000000000003360_411
- Apr 1, 2025
- Neurosurgery
INTRODUCTION: Cervical spinal cord injury (SCI) results in devastating paralysis. Spinal column injury (i.e., traumatic SCI) may result in worse outcomes as compared to non-traumatic SCI. However, there remains a lack robust data determining the role of traumatic etiology in prognosticating outcomes after cervical SCI. METHODS: From prospective cohort of SCI model systems, we included adult patients >15 years with traumatic SCI, neurological-level C1-C8, ASIA impairment-scale (AIS) A-D, presented within 30-days of SCI. Traumatic SCI was defined as SCI resulting from spinal column injury and non-traumatic SCI was defined as SCI without any spinal column injury. The primary outcome was composite independence in eating, bladder-management, and transfers domains of functional independence measure at 1-year. Each domain ranges from 1-7; lower score indicating greater functional dependence. Composite independence was defined as score of >=6 in at least 2 domains. RESULTS: Between 1992-2016, 853 patients with cervical SCI and complete neurological/functional measures were included. At baseline, 86% (737) had traumatic SCI and 14% (116) had non-traumatic SCI. Patients with traumatic SCI had significantly larger rates of motor-complete SCI (AIS A-B); 71% versus 31% in non-traumatic SCI (p<0.001). At one-year follow-up, non-traumatic SCI had significantly larger recovery rates in FIM functions compared to traumatic SCI; 53% of non-traumatic cervical SCI patients gained composite independence in FIM functions vs. 39% in traumatic cervical SCI (p=0.007). In multivariable regression, after accounting for age, sex, symmetry-of-SCI, and SCI severity by AIS grade, traumatic SCI was not a significant predictor of functional outcome (p=0.47). CONCLUSIONS: Although patients with traumatic SCI present with worse injury severity as compared to non-traumatic SCI. However, both traumatic and non-traumatic cervical SCI have a similar recovery potential. Optimization of clinical pathways is needed to provide appropriate rehabilitation care for patients with cervical SCI.
- Research Article
41
- 10.1089/neu.2019.6674
- Dec 6, 2019
- Journal of Neurotrauma
Over the last 5 years, multiple stakeholders in the field of spinal cord injury (SCI) research have initiated efforts to promote publications standards and enable sharing of experimental data. In 2016, the National Institutes of Health/National Institute of Neurological Disorders and Stroke hosted representatives from the SCI community to streamline these efforts and discuss the future of data sharing in the field according to the FAIR (Findable, Accessible, Interoperable and Reusable) data stewardship principles. As a next step, a multi-stakeholder group hosted a 2017 symposium in Washington, DC entitled "FAIR SCI Ahead: the Evolution of the Open Data Commons for Spinal Cord Injury research." The goal of this meeting was to receive feedback from the community regarding infrastructure, policies, and organization of a community-governed Open Data Commons (ODC) for pre-clinical SCI research. Here, we summarize the policy outcomes of this meeting and report on progress implementing these policies in the form of a digital ecosystem: the Open Data Commons for Spinal Cord Injury (ODC-SCI.org). ODC-SCI enables data management, harmonization, and controlled sharing of data in a manner consistent with the well-established norms of scholarly publication. Specifically, ODC-SCI is organized around virtual "laboratories" with the ability to share data within each of three distinct data-sharing spaces: within the laboratory, across verified laboratories, or publicly under a creative commons license (CC-BY 4.0) with a digital object identifier that enables data citation. The ODC-SCI implements FAIR data sharing and enables pooled data-driven discovery while crediting the generators of valuable SCI data.
- Research Article
- 10.2310/7ccsp.6173
- Sep 29, 2020
- DeckerMed Critical Care of the Surgical Patient
Traumatic brain and spinal cord injuries are significant causes of permanent disability and death. In 2010, 823,000 traumatic brain injuries were reported in the United States alone; in fact, the actual number is likely considerably higher because mild traumatic brain injuries and concussions are underreported. The number of new traumatic spinal cord injuries has been estimated at 12,000 annually. Survival from these injuries has increased due to improvements in medical care. This review covers mild traumatic brain injury and concussion, moderate to severe traumatic brain injury, and traumatic spinal cord injury. Figures include computed tomography scans showing a frontal contusion, diffuse cerebral edema and intracranial air from a gunshot wound, a subdural hematoma, an epidural hematoma, a skull fracture with epidural hematoma, and a spinal fracture from a gunshot wound. Tables list requirements for players with concussion, key guidelines for prehospital management of moderate to severe traumatic brain injury, key guidelines for management of moderate to severe traumatic brain injury, brain herniation brain code, key clinical practice guidelines for managing cervical spine and spinal cord injury, and the American Spinal Injury Association’s neurologic classification of spinal cord injury. This review contains 6 highly rendered figures, 12 tables, and 55 references.
- Research Article
- 10.2310/neuro.6173
- Sep 29, 2020
- DeckerMed Neurology
Traumatic brain and spinal cord injuries are significant causes of permanent disability and death. In 2010, 823,000 traumatic brain injuries were reported in the United States alone; in fact, the actual number is likely considerably higher because mild traumatic brain injuries and concussions are underreported. The number of new traumatic spinal cord injuries has been estimated at 12,000 annually. Survival from these injuries has increased due to improvements in medical care. This review covers mild traumatic brain injury and concussion, moderate to severe traumatic brain injury, and traumatic spinal cord injury. Figures include computed tomography scans showing a frontal contusion, diffuse cerebral edema and intracranial air from a gunshot wound, a subdural hematoma, an epidural hematoma, a skull fracture with epidural hematoma, and a spinal fracture from a gunshot wound. Tables list requirements for players with concussion, key guidelines for prehospital management of moderate to severe traumatic brain injury, key guidelines for management of moderate to severe traumatic brain injury, brain herniation brain code, key clinical practice guidelines for managing cervical spine and spinal cord injury, and the American Spinal Injury Association’s neurologic classification of spinal cord injury. This review contains 6 highly rendered figures, 12 tables, and 55 references.
- Research Article
- 10.2310/im.6173
- Sep 29, 2020
- DeckerMed Medicine
Traumatic brain and spinal cord injuries are significant causes of permanent disability and death. In 2010, 823,000 traumatic brain injuries were reported in the United States alone; in fact, the actual number is likely considerably higher because mild traumatic brain injuries and concussions are underreported. The number of new traumatic spinal cord injuries has been estimated at 12,000 annually. Survival from these injuries has increased due to improvements in medical care. This review covers mild traumatic brain injury and concussion, moderate to severe traumatic brain injury, and traumatic spinal cord injury. Figures include computed tomography scans showing a frontal contusion, diffuse cerebral edema and intracranial air from a gunshot wound, a subdural hematoma, an epidural hematoma, a skull fracture with epidural hematoma, and a spinal fracture from a gunshot wound. Tables list requirements for players with concussion, key guidelines for prehospital management of moderate to severe traumatic brain injury, key guidelines for management of moderate to severe traumatic brain injury, brain herniation brain code, key clinical practice guidelines for managing cervical spine and spinal cord injury, and the American Spinal Injury Association’s neurologic classification of spinal cord injury. This review contains 6 highly rendered figures, 12 tables, and 55 references.
- Research Article
- 10.2310/psych.6173
- Sep 29, 2020
- DeckerMed Psychiatry
Traumatic brain and spinal cord injuries are significant causes of permanent disability and death. In 2010, 823,000 traumatic brain injuries were reported in the United States alone; in fact, the actual number is likely considerably higher because mild traumatic brain injuries and concussions are underreported. The number of new traumatic spinal cord injuries has been estimated at 12,000 annually. Survival from these injuries has increased due to improvements in medical care. This review covers mild traumatic brain injury and concussion, moderate to severe traumatic brain injury, and traumatic spinal cord injury. Figures include computed tomography scans showing a frontal contusion, diffuse cerebral edema and intracranial air from a gunshot wound, a subdural hematoma, an epidural hematoma, a skull fracture with epidural hematoma, and a spinal fracture from a gunshot wound. Tables list requirements for players with concussion, key guidelines for prehospital management of moderate to severe traumatic brain injury, key guidelines for management of moderate to severe traumatic brain injury, brain herniation brain code, key clinical practice guidelines for managing cervical spine and spinal cord injury, and the American Spinal Injury Association’s neurologic classification of spinal cord injury. This review contains 6 highly rendered figures, 12 tables, and 55 references.
- Research Article
- 10.1503/cjs.014720
- Aug 1, 2020
- Canadian Journal of Surgery
# Presentation CPSS1: Spinal insufficiency fracture in the geriatric pediatric spine {#article-title-2} Regular corticosteroid has become standard for slowing disease progression in Duchenne muscular dystrophy (DMD). However, patients must contend with the insidious side effect of osteopenia and
- Research Article
- 10.1055/s-0036-1582942
- Apr 1, 2016
- Global Spine Journal
Introduction Traumatic spinal cord injury (tSCI) is a devastating condition affecting mostly young adults.1 Unfortunately, to date there are no standardized guidelines for treating these patients in the early phase and initial management can vary widely.2 Surgical decompression is considered to be a valid approach, however conclusive data regarding the best timing to perform it are still missing.3 The STASCIS trial evaluated the effect of surgical decompression pre- or 24 hours post-injury,4 however some aspects of its design have been criticized. The clinical study SCI-POEM aims to fill the gap of missing evidence by comparing the effect of early (<12 hour after injury) versus delayed (12 hour to 14 days after injury) surgical treatment.5 Material and Methods This is a prospective, multicenter, cohort study to test the superiority of early versus late surgery measured by the American Spinal Injury Association (ASIA) lower extremity motor score (ASIALEMS) pre-surgery and after 1 year. Inclusion criteria: Patients > 18 years old with tSCI, AIS grade A-D and indication of surgical management by the treating physician. To detect 6 points of difference in ASIALEMS with a power of 80%, a total of 300 patients are planned to be recruited in 17 clinics in 12 European countries within 3 years, assuming a 1:2 ratio of early vs delayed surgeries. Secondary outcome measures include different functional outcome scores and adverse events. Details about work, injury, main reason associated with a delayed surgery and steroid use are also collected. Results The study started recruitment in March 2013 and until August 2015, 137 eligible patients had been enrolled: 112 (81.8%) men and 25 (18.2%) woman with ages ranging from 18 to 89. Mechanism of injury was low energy trauma in 42 (30.7%) cases and high energy trauma in 95 (69.3%) cases. In 67 (48.9%) patients, traumatic lesion occurred at a single level. One third of cases suffered a complete spinal cord injury (ASIA A, postsurgery measurement). About 50% of decompression surgeries were performed within 12 hour after injury. Unwanted delays for tSCI treatment (as judged by the local investigator) occurred in 36 (26.3%) cases, of which 25 (69.5%) were caused by logistical issues (bed or imaging availability, transfer, etc) and 11 (30.5%) were due to medical reasons. Conclusion In our study, nearly two third of the cases had an incomplete spinal cord lesion (ASIA B-D), which highlights the relevance of appropriate and timely treatment to improve this situation. Strikingly, the actual rate of early vs delayed surgery is better than the anticipated 1:2 ratio. Even though 50% of the patients underwent early decompression, there was a considerable number of unwanted delays in the treatment of tSCI patients. The reasons for these delays are in most cases due to circumstances beyond the physician's control, such as time for transfer, availability of material resources or the medical condition of the patient. This information is important for future resource planning and suggests that improvements in material resources are needed across Europe. References Lopez AD, Mathers CD, Ezzati M, Jamison DT, Murray CJL. Global Burden of Disease and Risk Factors. New York: Oxford University Press; 2006 Fransen BL, Hosman AJ, van Middendorp JJ, Edwards M, van Grunsven PM, van de Meent H. Pre-hospital and acute management of traumatic spinal cord injury in the Netherlands: survey results urge the need for standardisation. Spinal Cord 2016;54(1):34–38 van Middendorp JJ, Hosman AJ, Doi SA. The effects of the timing of spinal surgery after traumatic spinal cord injury: a systematic review and meta-analysis. J Neurotrauma 2013;30(21):1781–1794 Fehlings MG, Vaccaro A, Wilson JR, et al. Early versus delayed decompression for traumatic cervical spinal cord injury: results of the Surgical Timing in Acute Spinal Cord Injury Study (STASCIS). PLoS ONE 2012;7(2):e32037 van Middendorp JJ, Barbagallo G, Schuetz M, Hosman AJ. Design and rationale of a Prospective, Observational European Multicenter study on the efficacy of acute surgical decompression after traumatic Spinal Cord Injury: the SCI-POEM study. Spinal Cord 2012;50(9):686–694
- Research Article
5
- 10.3389/fmed.2023.1237219
- Aug 22, 2023
- Frontiers in Medicine
Systematic review. The objective of this study was to evaluate the impact of phosphodiesterase (PDE) inhibitors on neurobehavioral outcomes in preclinical models of traumatic and non-traumatic spinal cord injury (SCI). A systematic review was conducted following the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) guidelines and was registered with PROSPERO (CRD42019150639). Searches were performed in MEDLINE and Embase. Studies were included if they evaluated the impact of PDE inhibitors on neurobehavioral outcomes in preclinical models of traumatic or non-traumatic SCI. Data were extracted from relevant studies, including sample characteristics, injury model, and neurobehavioral assessment and outcomes. Risk of bias was assessed using the SYRCLE checklist. The search yielded a total of 1,679 studies, of which 22 met inclusion criteria. Sample sizes ranged from 11 to 144 animals. PDE inhibitors used include rolipram (n = 16), cilostazol (n = 4), roflumilast (n = 1), and PDE4-I (n = 1). The injury models used were traumatic SCI (n = 18), spinal cord ischemia (n = 3), and degenerative cervical myelopathy (n = 1). The most commonly assessed outcome measures were Basso, Beattie, Bresnahan (BBB) locomotor score (n = 13), and grid walking (n = 7). Of the 22 papers that met the final inclusion criteria, 12 showed a significant improvement in neurobehavioral outcomes following the use of PDE inhibitors, four papers had mixed findings and six found PDE inhibitors to be ineffective in improving neurobehavioral recovery following an SCI. Notably, these findings were broadly consistent across different PDE inhibitors and spinal cord injury models. In preclinical models of traumatic and non-traumatic SCI, the administration of PDE inhibitors appeared to be associated with statistically significant improvements in neurobehavioral outcomes in a majority of included studies. However, the evidence was inconsistent with a high risk of bias. This review provides a foundation to aid the interpretation of subsequent clinical trials of PDE inhibitors in spinal cord injury. https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=150639, identifier: CRD42019150639.
- Research Article
27
- 10.2340/16501977-2795
- Jan 1, 2021
- Journal of Rehabilitation Medicine
ObjectivesTo provide a methodological reference paper for the inception cohort of the Swiss Spinal Cord Injury Cohort Study (SwiSCI), by detailing its methodological features and reporting on participant characteristics, response rates and non-response bias.DesignProspective cohort study starting in 2013 in all 4 specialized rehabilitation centres in Switzerland.SubjectsIncluded are 655 newly diagnosed first rehabilitation patients aged ≥16 years with traumatic or non-traumatic spinal cord injury (TSCI, NTSCI).MethodsDescriptive statistics were used to depict participant characteristics and to compare characteristics of responders and non-responders. Logistic regressions were conducted to estimate non-response bias.RESULTSThe sample consisted of 69% males, with mean age 53.5 years, 57.9% TSCI, 60.7% paraplegia and 78.8% incomplete SCI. Males and younger persons more often sustained TSCI and more severe SCI, resulting in longer duration of rehabilitation. Complete lesions were more prevalent in TSCI compared to NTSCI. The response rate was 47.5% and study participation was less likely in females, older persons, persons with lower functional independence and those with NTSCI.ConclusionSwiSCI inception cohort data enable the estimation of epidemiological figures of SCI in Switzerland, and prognostic and trajectory modelling of outcomes after SCI to guide policy, service provision and clinical practice.LAY ABSTRACTThe inception cohort of the Swiss Spinal Cord Injury Cohort Study (SwiSCI) is a prospective study including newly diagnosed first rehabilitation patients aged over 16 years with traumatic or non-traumatic spinal cord injury (SCI) who received first rehabilitation in a specialized center in Switzerland. This paper describes the methods and the design of the SwiSCI inception cohort and reports on participant characteristics, response rates and differences between respondents and non-respondents. The response rate was 47.5% and 655 patients participated in the study. Of participants, 69.0% were male, mean age was 53.5 years, 57.9% had traumatic SCI, 60.7% paraplegia and 78.8% incomplete SCI. Male subjects and younger persons more often sustained traumatic SCI and more severe SCI, resulting in longer duration of rehabilitation. Complete lesions were more prevalent in traumatic SCI compared with non-traumatic SCI. Females, older persons, persons with lower functional independence and those with non-traumatic SCI were less likely to participate in the study.
- Research Article
77
- 10.1038/sc.2008.127
- Nov 11, 2008
- Spinal Cord
Multi-centre prospective descriptive study. To establish a profile of the population affected with traumatic and non-traumatic spinal cord injury (SCI) admitted to rehabilitation centres in the Netherlands and Flanders (Belgium) and to describe determinants of length of stay (LOS) and functional outcome. Eleven rehabilitation centres in the Netherlands and Flanders. A total of 919 patients with traumatic and non-traumatic SCI on first admission to rehabilitation centres between 2002 and 2007. Information about LOS, functional outcome and personal and injury characteristics was derived from a joint data set developed for this project. A total of 54.7% of patients with SCI had a non-traumatic lesion. The group of patients with non-traumatic SCI showed a more even gender distribution, a more advanced age and less severe lesion characteristics than the group of patients with traumatic SCI. Linear regression models explained 32% of the variance of LOS and 42% of the variance of functional outcome. Functional status on admission was the strongest determinant of LOS and completeness of the lesion was the strongest determinant of functional outcome. Aetiology (traumatic versus non-traumatic) was a weak independent determinant of LOS but was not an independent determinant of functional outcome. Patients with non-traumatic SCI formed a majority in the Dutch and Flemish SCI population. Although the characteristics of patients with traumatic and non-traumatic SCI clearly differed, rehabilitation of patients with non-traumatic SCI appears at least as efficient as rehabilitation of patients with traumatic SCI.
- Front Matter
5
- 10.1016/j.xnsj.2020.100019
- Aug 5, 2020
- North American Spine Society Journal (NASSJ)
Evidence-based medicine and clinical decision-making in spine surgery
- Research Article
4
- 10.1080/10790268.2021.1950454
- Jul 23, 2021
- The Journal of Spinal Cord Medicine
Objective: To identify factors that are associated with sports participation following spinal cord injury (SCI). Study Design: Case–control study. Setting: Spinal Rehabilitation outpatient clinic in a tertiary hospital in Kuala Lumpur, Malaysia. Participants: Thirty-one sports participants (SP) and thirty-four non-sports participants (NSP) (N = 65) met the following inclusion criteria; chronic SCI more than one year, age between 18 and 50 years, both traumatic and non-traumatic SCI at C5 level and below, complete or incomplete SCI (AIS A-D) and mobilizing with either manual or motorized wheelchair independently. Methods: Face-to-face interviews were performed with a 22-item self-constructed questionnaire which contained four domains of variables; socio-demographic, SCI-related, environmental and sports-related factors. Data collection was done between June 2017 and May 2018. Results: Traumatic SCI, pre-injury interest in sports, pre-injury sports participation, ability to drive own vehicles, and being employed were significantly associated with sports participation post-SCI (p < 0.05). Multiple logistic regression revealed traumatic SCI (p = 0.012, OR 34.70, CI 2.21–545.90) and pre-injury interest in sports (p = 0.046, OR 29.10, CI 1.06–798.95) to be independent predictors of sports participation post-SCI. Conclusion: Traumatic SCI and pre-injury interest in sports were predictors of sports participation post-SCI. Pre-injury sports participation, being employed, and the ability to drive own vehicles were positively associated with sports participation. Findings from this study suggest a few crucial differences in facilitators and barriers to sports participation in Malaysia compared to other countries.
- Research Article
38
- 10.3171/2009.5.spine08896
- Oct 1, 2009
- Journal of Neurosurgery: Spine
Pressure ulcers (PUs) are common complications in patients with complete spinal cord injury (SCI) or incomplete SCI in which sensory function is spared. Most studies analyzing associated factors of PU and SCI have been performed in cases of traumatic SCI and in just a few cases of nontraumatic SCI. This study was designed to look specifically at the differences in causative factors of PU in cases of traumatic and nontraumatic SCIs. The authors performed a retrospective, cross-sectional study evaluating patients with complete and incomplete SCIs (American Spinal Injury Association Grades A and B) under the coverage of the financial, medicosocial, and rehabilitative support provided by the State Welfare Organization of Iran (SWOI). There were 3791 cases of traumatic SCI (63.2%) and 2110 cases of nontraumatic SCI (35.2%). For 94 patients (1.6%), sufficient data were not available. A PU was detected in 39.2% of all patients with an SCI (71.8% of those with traumatic SCI vs 28.2% of those with nontraumatic SCI). A univariate analysis showed a significant association between occupation, education, and the presence of PU in patients with a traumatic SCI (p < 0.05). This contrasted with nontraumatic SCI in which an association between PU and age was noted (p < 0.05). Using logistic regression, traumatic cause, older age, an interval less than 1 year since the onset of SCI, male sex, and single status were found to significantly increase the risk of PU in all patients with an SCI. However, a higher education level had a preventive effect on PU. This study revealed some risk factors for PU in the authors' setting. The authors' findings suggest a possible difference between the risk factors for PU in patients with both types of SCI. Further study on the pathoetiology of these differences is paramount in the future.