Assessment of Haemophilia Management in Algeria: Challenges and Perspectives

OBJECTIVES: A patient registry under ownership of the Algerian Ministry of Health was established to collect real-world evidence on the management of rare haematological disorders, including haemophilia. This analysis aimed to evaluate haemophilia management in Algeria over a 3‑year period.

METHODS: This national, multicentre, observational study included patients with haemophilia A and B in Algeria at 10 participating centres between 01 July 2018 and 24 April 2022. Data were entered using a digital platform by each participating centre. Haemophilia type, severity and management were assessed.

RESULTS: Of 1299 patients (1286 male; 13 female) with haemophilia recruited, 1091 (83.99%) and 208 (16.01%) had haemophilia A and B, respectively. 870 (66.97%) had severe, 222 (17.09%) moderate and 191 (14.70%) mild haemophilia; the remaining cases were unspecified. 541 patients received haemophilia diagnosis following a haemorrhagic event, 94 patients from investigations due to known family history; other circumstances of discovery included circumcision (n=80), haemostatic assessment (n=63), surgery (n=10) and fracture (n=1). At the time of diagnosis, 13 patients were <1 year, 49 1–2 years, 391 2–12 years and 846 >12 years of age. Inhibitors were reported in 152 (11.71%) patients. 427 (32.87%) patients were treated with plasma-derived factor concentrates and 419 (32.26%) with recombinant products, with the rest not specified. On‑demand treatment was reported in 444 patients, of which 126 (28.38%) were <12 years of age; prophylaxis was reported in 494 patients, of which 176 (84.21%) <12 years received primary prophylaxis; the remaining cases had no factor therapy or missing data.

CONCLUSIONS: This study highlights a remaining unmet need among patients with haemophilia in Algeria and further emphasizes the need to upgrade haemophilia care to international standards.