OBJECTIVES: A patient registry under the ownership of the Algerian Ministry of Health aims to collect local real-world evidence to monitor innovative care in congenital bleeding disorders, including hemophilia. The objective of this analysis was to evaluate the current management of patients with hemophilia in Algeria.

METHODS: “Barometer” is a national, multicenter, observational registry that began consenting patients with hemophilia and other congenital bleeding disorders at 14 treatment centers (adult 8; pediatric 6) on 01 July 2018. Data were entered using a digital platform in real time by the treating physician. Parameters collected and evaluated by a multidisciplinary team included demographic and geographical characteristics, hematological diagnoses, disease severity and treatment modalities.

RESULTS: 1134 patients with hemophilia were recruited, representing approximately 40% of known patients recorded in Algeria in 2020. Hemophilia A and B patients comprised 934 (82%) and 200 (18%), respectively, including 13 cases of female hemophilia. Inhibitors were reported in 126 patients with hemophilia A and 2 patients with hemophilia B. At the time of registration, 351 (31%) patients were under the age of 12 and 783 (69%) were older than 12 years. 772 (68%) had severe, 194 (17%) moderate and 165 (15%) mild hemophilia. 406 patients were treated with plasma-derived factor replacement products, of which 74 were below 12 years of age, and 359 were treated with recombinant products, of which 192 were under 12 years. Prophylaxis had been initiated in 458 patients: 194 primary and 264 secondary. Home treatment was noted for 300 patients.

CONCLUSIONS: This first real-world study highlights a remaining medical need among patients with hemophilia in Algeria, including the use of plasma-derived factor replacement products, highlighting a real need to upgrade hemophilia care, especially in children, to international standards.