Open Access

REVIEW

The International Quality Improvement Collaborative for Congenital Heart Disease: Registry Development, Long-Term Trends, and Current Surgical Outcomes in Low- and Middle-Income Countries

Hannah Paige Rogers¹, Kimberlee Gauvreau¹, Anna Fisk¹, Babar Hasan², Patricia Hickey¹, Raman Krishna Kumar³, William Novick^4,5, Nestor Sandoval⁶, Bistra Zheleva⁷, Kathy J. Jenkins^1,*

1 Department of Cardiology, Boston Children’s Hospital, Boston, MA, USA
2 Division of Cardiothoracic Sciences, Sindh Institute of Urology and Transplantation (SIUT), Karachi, Pakistan
3 Department of Pediatric Cardiology, Amrita Institute of Medical Sciences and Research Centre, Kochi, Kerala, India
4 Global Cardiac Alliance, Memphis, TN, USA
5 Global Surgery Institute, University of Tennessee Health Science Center, Memphis, TN, USA
6 Department of Cardiovascular Surgery, Fundación Cardioinfantil-Instituto de Cardiología, Bogotá, Colombia
7 Children’s HeartLink, Minneapolis, MN, USA

* Corresponding Author: Kathy J. Jenkins. Email:

(This article belongs to the Special Issue: Registries in Congenital Heart Disease)

Structural and Congenital Heart Disease 2026, 21(4), 1 https://doi.org/10.32604/schd.2026.085936

Received 21 May 2026; Accepted 18 September 2026; Issue published 30 September 2026

Abstract

Background: Congenital heart disease (CHD) remains the most common birth defect worldwide, with nearly one-quarter of affected infants requiring intervention in the first year of life. Despite global reductions in childhood mortality, 90% of children born with CHD in low- and middle-income countries (LMICs) lack access to essential cardiac care, contributing to significantly higher morbidity and mortality from CHD compared to high-income countries. The International Quality Improvement Collaborative for Congenital Heart Disease: Improving Care for Low- and Middle-Income Countries (IQIC) was established in 2008 to address these gaps by supporting LMIC cardiac centers through standardized surgical data collection, annual virtual audits, benchmarking, and quality improvement (QI) education. Objective: To describe the development of the IQIC congenital heart surgery registry, summarize findings from 2024, and highlight trends, challenges, and future directions for improving CHD outcomes in LMICs. Methods: Participating IQIC centers submit data for all cases of congenital heart surgery and undergo annual data audits to assess data accuracy and quality. Data from sites that passed the audit in 2024 were analyzed. Demographics, procedural characteristics, mortality, and major infections were examined. Standardized mortality and infection ratios (SMR, SIR) were calculated based on the RACHS-1 method using data from 2016–2020. Temporal trends from 2010 to 2024 were analyzed to assess changes in case complexity and risk-adjusted outcomes. Results: Of 15,560 cases submitted in 2024, 12,679 (82%) from 45 sites passed the audit and were included in aggregate analyses. Surgery was performed at <1 year of age in 41%, and 58% were <5th percentile for weight- or BMI-for-age. Nearly half of procedures were RACHS-1 category 2, and 7.9% were high-risk (RACHS 4–6). In-hospital mortality was 4.9%, and 30-day mortality was 5.1%. Major infections occurred in 6.9% of patients. SMR was stable, and SIR was higher in 2024 compared to 2016–2020 (2024 SMR 1.07, 95% CI 0.98–1.17; SIR 1.36, 95% CI 1.27–1.45) despite increasing case complexity. Conclusions: The IQIC network demonstrates that large-scale, multinational registries and QI are feasible in LMIC settings. IQIC plays an important role in advancing congenital heart surgery outcomes in low-resource settings through collaborative data sharing, benchmarking, and QI programs to address common challenges. Strengthening infection prevention, improving perioperative nutritional support, expanding team-based practice and communication, and enhancing data infrastructure are key priorities.

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