Haemophilia Care in India: A Multicentre Cross-Sectional Analysis From the World Bleeding Disorders Registry Benchmarking Across Global Gross National Income Strata.

BACKGROUND

Haemophilia care varies across economic settings, influencing diagnosis, treatment and outcomes. The World Bleeding Disorders Registry (WBDR) enables standardized, patient-level global benchmarking. We present the first multicentre analysis of Indian persons with haemophilia (PwH) in the WBDR, enabling robust benchmarking against regional and income-stratified global cohorts.

METHODS

This cross-sectional study analysed de-identified WBDR data from six haemophilia treatment centres in India across geographic areas. Standardized demographic, clinical, and treatment indicators were benchmarked against South-East Asia (SEA), income-stratified global WBDR cohorts, and World Federation of Hemophilia Annual Global Survey (WFH AGS) 2023 data, focusing on diagnosis, severity, treatment, functional status, inhibitor status and employment.

RESULTS

Among 1,780 PwH (86% haemophilia A), 77% had severe disease. Median age was 20 years (IQR 11-31), significantly younger than global WBDR and AGS cohorts (p < 0.001). Median age at diagnosis for severe haemophilia was 60 months (IQR 12180), markedly later than in upper-middle- and high-income countries (p < 10- 1 5). Only 7% of severe PwH received prophylaxis compared with >60% in high-income settings, higher ABR (median 6 vs 01) and greater target-joint prevalence (31% vs 9%; p < 0.001). Among adults, 62% were employed, comparable to other lower-middle-income countries. Inhibitor surveillance was limited: 2% of severe PwH were tested in the prior 12 months, while lifetime inhibitor prevalence was 14%, similar to regional LMIC cohorts.

CONCLUSIONS

Indian WBDR data underscore the value of registry participation for meaningful benchmarking of haemophilia care, highlighting progress in diagnosis and employment outcomes alongside clear opportunities to expand treatment coverage and improve clinical outcomes.