Do we need a pediatric cardiac critical care registry in India?

Dear Editor, The estimated birth prevalence of significant congenital heart disease (CHD) in India is about 8 per 1000 live births, translating to nearly 240,000 new CHD cases each year. Of these, approximately 40,000–90,000 infants and children require early intervention; however, the majority still do not receive timely care. Although the past two decades have seen a considerable expansion of pediatric cardiac services across India – with more centers performing complex congenital cardiac surgeries and providing postoperative care – the current data suggest that only about 40–90 tertiary centers deliver pediatric cardiac care. Among these, merely 20–30 centers consistently report patient-level data in multicenter studies and surveys.[1,2] Despite this growth, robust multicenter data on pediatric cardiac intensive care unit (PCICU) outcomes, case mix, resource utilization, and postoperative complications remain limited and fragmented. A recent pooled analysis of outcomes following CHD surgery in India (30,587 patients across 135 studies) reported an overall pooled operative mortality of 5.63% (95% CI 4.26–7.16), substantially higher than pooled figures reported from large Western congenital surgery databases, emphasizing both the clinical burden and the scope for improvement.[3] Most published follow-up and complication series are single-center or limited-cohort multicenter studies with variable follow-up durations. Systematic national longitudinal datasets covering functional outcomes, neurodevelopment, readmissions, and long-term survival are essentially absent. This gap hampers benchmarking, quality improvement efforts, workforce planning, and evidence-based policymaking for a population with a substantial burden of CHD. Large, well-governed registries from other regions illustrate the potential benefits of collaborative data platforms. The Pediatric Cardiac Critical Care Consortium (PC4) was specifically developed to enable shared learning and collaborative quality improvement among PCICUs; its developmental publications describe the registry’s structure, objectives, and governance for multicenter data sharing and improvement.[4] Audits of PC4 data have demonstrated high completeness and accuracy, supporting the reliability of registry-driven research and quality-improvement work.[5] Moreover, examples from established registries show how inclusive datasets capturing pre-, intra-, and postoperative variables, including CPB (cardiopulmonary bypass) metrics, can change bedside practice and system-level processes.[4,5] While several Indian centers maintain internal databases, and the Indian Association of Cardiothoracic and Vascular Surgeons has recently initiated a national surgical database with a congenital portfolio,[6] these platforms do not yet provide detailed, perioperative, pediatric cardiac critical care data or standardized ICU-level metrics. A dedicated PCICU registry would therefore complement existing initiatives rather than duplicate them, providing a scalable, critical-care-focused dataset. For India, a bespoke pediatric cardiac critical care registry would serve several urgent functions. First, it would permit risk-adjusted outcome benchmarking across diverse institutions – ranging from high-volume tertiary centers to smaller regional units – thereby identifying variation amenable to targeted improvement. Second, registry data could inform workforce and training needs, support evidence-based allocation of scarce technologies (e.g., extracorporeal membrane oxygenation), and guide national-level policy for congenital heart services. Third, a registry would serve as a platform for pragmatic research (epidemiology, outcomes, and device/technique evaluations) and for monitoring the impact of interventions, such as local QI bundles or standardized postoperative care pathways. To be truly effective for benchmarking and quality improvement, an Indian PCICU registry must capture variables across the entire perioperative chain rather than focusing solely on postoperative outcomes. This includes essential preoperative data (diagnosis, comorbidities, syndromic association, nutritional status, preoperative ventilation, and sepsis), detailed intraoperative information (anesthetic technique, surgical complexity scores, CPB-related variables such as duration, aortic cross-clamp time, temperature strategies, cannulation techniques, hypothermic cardiac arrest and antegrade cerebral perfusion, transfusion and anticoagulation practices, and intraoperative complications), as well as standardized postoperative parameters including ventilation strategies, inotropic support, pain and sedation management, nutrition, sepsis trigger, antibiogram and clearly defined complication endpoints. A comprehensive dataset structured in this manner would enable robust risk adjustment and meaningful comparisons across centers. Challenges specific to India – heterogeneous electronic health record availability, variable coding practices, differing definitions of complications, and limited funding – are real but surmountable. In addition, in the Indian setting, the nation’s vast cultural, geographic, and socioeconomic diversity produces a broad spectrum of centers from high-volume urban tertiary hospitals to low-volume regional units with important differences in case-mix, timing of presentation, and preoperative condition. Late presentations, higher rates of malnutrition, recurrent infection, and variable access to referral networks all influence both peri-operative risk and immediate outcomes. Regional and gender inequities (fewer girls reaching tertiary surgical care in some series) and financial constraints compound barriers to access and follow-up.[1,7] Finally, published Indian data on postoperative complications, ICU resource use, and longitudinal follow-up are largely single-center or limited-cohort studies rather than systematic national datasets, making it difficult to draw generalizable, risk-adjusted conclusions and to plan workforce and resource allocation at the national level.[3] Establishing a clear framework for data governance, privacy protection, and secure data sharing, aligned with national digital health principles and recent data-protection legislation, will be essential to ensure the responsible use of patient information and support institutional participation.[8] A coordinated national effort to establish a Pediatric Cardiac Critical Care Registry in India – beginning as a pilot consortium of centers committed to standardized data collection and quality improvement – could provide the necessary framework for collaborative progress. Success would require a clear governance framework, funding strategy (society grants, institutional support, or philanthropic seed funding), training for data collection and audit, and a transparent process for data access and authorship. This rationale mirrors the successes seen in other registry-based collaborations. A registry has the potential to convert disparate institutional experiences into shared knowledge, improving outcomes for children with CHD across the country. Financial support and sponsorship Nil. Conflicts of interest There are no conflicts of interest.