Dear Editor, Spinal cord injury (SCI) represents a major community health challenge that remains under-recognized, despite its chronic impact on functional ability, health, and social participation. Advances in emergency and trauma care have led to improved short-term survival after SCI, survival alone does not reflect the full burden of the condition. From a population health perspective, SCI is increasingly recognized as a chronic, life-course condition characterized by impaired functional limitations, secondary medical complications, and long-term social consequences.1,2 Despite this, existing injury surveillance and health information systems in India remain largely oriented toward documentation of acute events of injury, resulting in the systematic underrepresentation of the long-term SCI burden. CURRENT LANDSCAPE OF SPINAL CORD INJURY SURVEILLANCE IN INDIA In India, SCI is predominantly captured within health information systems through acute care and trauma reporting mechanisms, largely derived from police- and hospital-based injury reporting systems such as those maintained by the National Crime Records Bureau.3 Data collection during this phase usually focuses on injury etiology, neurological level and severity, surgical intervention, and short-term survival outcomes. These indicators are important for emergency response planning and acute clinical decision-making; they offer a narrow representation of the full spectrum of SCI-related outcomes.4 At present, India lacks a dedicated national spinal cord injury registry or structured surveillance system capable of longitudinal monitoring. Existing injury surveillance frameworks are mostly event-based and typically terminate at or soon after hospital discharge. As a result, persons with SCI are systematically excluded from post-acute surveillance, leading to a significant discontinuity in epidemiological data capture. This gap results in persons living with SCI becoming invisible within both trauma surveillance systems and within health information systems, thereby missing the true long-term burden of the condition. ATTRITION OF SCI-RELATED DATA ACROSS THE CONTINUUM OF CARE Figure 1 conceptualizes SCI surveillance in India as an attrition funnel to illustrate the fact that progressive loss of SCI-related information occurs across healthcare settings. Although the full impact of SCI exists at the population level, only a fraction of outcomes is represented in the acute care datasets. As individuals move through discharge, rehabilitation, and long-term community living, the visibility of SCI-related outcomes diminishes substantially.Figure 1: Attrition of spinal cord injury (SCI) surveillance across the continuum of care in India, highlighting progressive loss of outcome data from population level to long-term community livingThe major outcome domains characterizing long-term SCI course of events, such as functional independence, health-related quality of life, bladder and bowel dysfunction, sexual health, psychosocial participation, employment status, and caregiver burden, are not often recorded in a systematic or standardized format. These effects are dynamic and become the key to the lived experience of SCI, but they do not feature much in the regular surveillance. Therefore, the chronic cumulative disability, which is related to SCI, is not well captured in the population health statistics. ABSENCE OF SECONDARY COMPLICATION SURVEILLANCE One of the most important and least acknowledged gaps in the existing surveillance mechanisms is the lack of systematic observation of secondary medical complications of SCI. Preventable complications, such as recurrent urinary tract infections, pressure injuries, respiratory infections, and bowel and bladder dysfunction, are well-established drivers of morbidity, rehospitalization, healthcare expenditure, and premature mortality among individuals with SCI.2,5 Despite their importance, these complications are not regularly included in injury surveillance or health information systems in India. The absence of complication surveillance reduces the capacity of the health systems to detect failures in continuity of care, the effectiveness of rehabilitation services, or implementation of specific secondary prevention strategies. As such potentially modifiable contributors to long-term disability remain unaddressed. IMPLICATIONS FOR DISABILITY BURDEN ESTIMATION AND HEALTH SYSTEM PLANNING The lack of longitudinal outcome and complication data leads to a systematic underestimation of SCI-related disability burden.1,6 Surveillance frameworks based on mortality and acute injury indicators inherently prioritize the short term in the process of identifying functional, medical, and participation-related consequences which define long-term disability. This distortion has important downstream effects where the rehabilitation needs are poorly measured, leading to underinvestment in rehabilitation infrastructure, rehabilitation workforce, and provision of assistive technology. Community-based services are still fragmented and disability-inclusive planning is inconsistently incorporated into larger public health and health systems strategies. Furthermore, a lack of longitudinal data limits economic evaluations and limits the understanding of the long-term costs associated with SCI-related disability or secondary complications. FRAGMENTATION AND LACK OF DATA LINKAGE ACROSS CARE SETTINGS An additional structural limitation is the lack of linkages between the injury surveillance systems, rehabilitation services, and community health programs. Current data architectures do not facilitate longitudinal tracking of individuals with spinal cord injury throughout the continuum of acute care, inpatient and outpatient rehabilitation, and long-term community living. This fragmentation makes it impossible to fully assess care pathways and obscures transitions between sectors of service provision. As a result, policy and planning decisions are informed by isolated snapshots of injury events rather than by trajectories of health, functioning, and participation. The lack of ability to follow individuals longitudinally limits accountability across providers and limits the development of integrated, person-centered models of care. CONCEPTUAL LIMITATIONS OF EVENT-BASED INJURY SURVEILLANCE Taken together, these gaps indicate that the lack of a comprehensive spinal cord injury (SCI) registry in India is not only the outcome of a technical deficit in data but also this indicates a conceptual limit in the design of injury surveillance. Through the framework of SCI as primarily an acute event, the system already in existence systematically marginalizes long-term consequences for functional outcomes, secondary complications, and social participation. This event-based framing is increasingly misaligned with contemporary public health approaches that emphasize life-course perspectives, chronic condition management, and disability-inclusive health systems.1,6 TOWARD A COMPREHENSIVE SCI REGISTRY: CORE DOMAINS FOR SURVEILLANCE Strengthening SCI surveillance in India requires a shift from event-based injury reporting to condition-based longitudinal surveillance. Table 1 outlines recommended core domains and minimum data elements for a national SCI registry. In addition to acute injury characteristics along with a standardized neurological assessment employing the ASIA Impairment Scale, the proposed framework prioritizes on functional outcomes, wheelchair utilization, adaptive physical activity participation which includes wheelchair sports, secondary medical complications, rehabilitation service utilization, and participation-related outcomes.Table 1: Recommended core domains and minimum data elements for a national spinal cord injury registry in IndiaImportantly, inclusion of wheelchair uses and physical activity participation provides insight into mobility, social reintegration, and secondary prevention dimensions that are rarely considered within existing surveillance systems but are central to long-term health and quality of life among persons with SCI. To conclude, the current absence of a national SCI registry and systematic surveillance of long-term outcomes and complications in India represents a significant public health blind spot. Addressing this gap is essential to move beyond survival-focused metrics and toward a comprehensive understanding of SCI burden. Strengthening injury surveillance and health information systems to reflect the chronic and evolving nature of SCI would enable accurate disability burden estimation, inform rehabilitation and workforce planning, support secondary prevention, and promote disability-inclusive public health policy development. Sincerely, Financial support and sponsorship Nil. Conflicts of interest There are no conflicts of interest.
Thirumalai et al. (Wed,) studied this question.