Ten-year Demographic and Clinical Characterisation of People With Haemophilia: The Colombian Registry Experience.

BACKGROUND

The Colombian Registry of Haemophilia and other Coagulopathies (CRHOC) was established in 2014 to centralize nationwide data on haemophilia patients through mandatory reporting by all treatment centres and healthcare payers.

OBJECTIVE

To describe 10-year trends in epidemiological patterns, treatment access, and health outcomes among individuals with haemophilia reported to the CRHOC.

METHODS

This longitudinal analysis included all haemophilia patients reported to the CRHOC between February 2014 and January 2024. Sociodemographic and clinical characteristics, treatment patterns, and quality-of-care indicators were analysed. Data underwent standardized quality assurance procedures, including validation frameworks and medical record verification.

RESULTS

From 2014 to 2024, 3699 people with haemophilia were reported (83.1% haemophilia A; 16.9% haemophilia B). Prevalence increased over time, while prevalence of high-titre inhibitor declined for both types. Prophylaxis coverage exceeded 95% in children and 85% in adults with severe haemophilia. Treatment patterns shifted notably, with increased adoption of extended half-life products and emicizumab for haemophilia A. The prevalence of chronic arthropathy remained stable in children but increased in adults, despite widespread use of prophylaxis. Access to multidisciplinary care improved significantly over the decade.

CONCLUSION

Over ten years, the CRHOC has documented substantial improvements in haemophilia care in Colombia, including near-universal access to prophylaxis, reduced inhibitor prevalence, and increased use of innovative therapies. The consistent expansion of multidisciplinary care has enhanced patient management. As a comprehensive national registry, the CRHOC provides high-quality data to inform evidence-based health policy decisions and serves as a model for improving clinical outcomes in rare disease management.

REMARK: 1) Why was this study conducted? This study was conducted to describe and analyse the 10-year trends in epidemiological patterns, treatment access, and health outcomes among people with haemophilia reported to the Colombian Registry of Haemophilia and other Coagulopathies (CRHOC) since its establishment in 2014. As one of the comprehensive registries in the region, the CRHOC provides a unique opportunity to evaluate the impact of Colombia's national strategy for integrated haemophilia care. 2) What were the most relevant results of the study? Key findings include: (1) a progressive increase in the number of identified people with haemophilia, accompanied by declining high-titre inhibitor prevalence in both haemophilia A and B; (2) high prophylaxis coverage, exceeding 95% in children and 85% in adults with severe haemophilia; (3) a marked shift in treatment paradigms, with broader adoption of extended half-life products and emicizumab in haemophilia A; (4) stable prevalence of chronic haemophilic arthropathy in children but increasing prevalence among adults despite widespread prophylaxis use; and (5) progressive improvements in access to multidisciplinary care over the decade, reflecting the expansion of comprehensive haemophilia care in Colombia. 3) What do these results contribute? These findings provide robust evidence on the effectiveness of a national registry in enhancing clinical outcomes and optimizing healthcare delivery for people with haemophilia. The CRHOC exemplifies how systematic data collection can both inform policy decisions and clinical practices, ultimately driving improvements in patients care. Moreover, the findings highlight both achievements and ongoing challenges in haemophilia management, offering transferable lessons for other middle-income countries implementing registry-based strategies. This ten-year analysis also serves as a critical benchmark for evaluating long-term outcomes within comprehensive haemophilia care programmes globally.