Targeted antenatal screening and prevention of hemoglobinopathies inindia: Outcomes from a multi-state implementation of the sankalp model

Abstract

Abstract Hemoglobinopathies constitute a substantial public health concern in India, with estimates suggesting 100,000–150,000 individuals living with transfusion-dependent thalassemia and a carrier frequency of 3–4% nationwide. The absence of a national registry, increasing annual blood requirements, and projected treatment costs nearing 19% of the national health budget by 2026 underscore the urgent need for broad, effective prevention strategies(1). Traditional mass and premarital screening approaches have seen limited impact in the Indian context, highlighting the need for culturally acceptable, scalable, and outcome-driven models Between May 2022 and May 2025, the Sankalp Antenatal Screening Model was implemented across 87 public hospitals in 81 districts, spanning five high-burden states. All pregnant women attending antenatal care were offered high-performance liquid chromatography (HPLC)-first carrier screening (2), with subsequent partner and fetal diagnostic testing as needed. Data were managed via a centralized cloud platform (StopThal), enabling real-time tracking and coordination. Program performance was assessed by Screening Index (timely, informed screening of eligible women), Prevention Index (number of women enrolled per birth prevented (3), and cost metrics, as recently endorsed for program benchmarking in hemoglobinopathy prevention. Among 190,254 enrolled families, 181,342 women (95.3%) underwent successful screening. Carrier status was identified in 13,902 women (7.31%), with 1,900 at-risk couples detected. A total of 1,408 prenatal diagnostic procedures (CVS/amniocentesis) uncovered 312 affected fetuses. Elective termination for prevention was chosen in 206 pregnancies (68% of those diagnosed as affected). The Prevention Index was 923, corresponding to one affected birth prevented per 923 women enrolled. Screening Index exceeded 95%. The cost per woman screened was INR 550 (USD ~$6.40), with a cost per prevention of INR 507,650 (USD ~$5,900), significantly lower than the lifetime cost of supportive treatment. Notably, an "HPLC-first"(2) screening algorithm improved detection by 14% over CBC-first, with minimal added cost and improved workflow efficiency. Adoption of Screening Index and Prevention Index allowed for transparent, real-time quality monitoring and inter-center performance benchmarking, as recommended for sustainable program evaluation. The Sankalp Model demonstrates that strategically integrated, antenatal HPLC-first screening linked with partner and prenatal diagnosis is highly feasible and cost-effective for reducing the burden of hemoglobinopathies in high- prevalence, resource-constrained settings. Universal, early-pregnancy screening with digital data coordination can achieve substantial reductions in affected births without reliance on mandates or mass school-based programs. Adoption of standardized indicators such as Screening Index and Prevention Index is practical for real-world program management and enables scalable, outcome-driven prevention of hemoglobinopathies in India and comparable global settings.