The largest coagulation disorders meeting of the Nordic Countries, The 50th Nordic Coagulation Meeting, was organized in Helsinki last week. At the meeting, MedEngine presented the first results from its unique nationwide real world data cohort HemoHEOR.
Hemophilia is a chronic congenital bleeding disorder, caused by a deficiency of coagulation factor VIII (FVIII) in hemophilia A or factor IX (FIX) in hemophilia B. The disease is characterized by spontaneous, often uncontrolled and potentially life-threatening bleeding into joints, muscles and other soft tissues. Hemophilia is a rare disorder but its management imposes a high economic burden on society and health care organizations.
The aim of the HemoHEOR (Hemophilia Health Economics and Outcomes Research) project is to evaluate the treatment outcomes and costs of hemophilia in real-life clinical practice. The study is based on a unique nationwide real-world data collection, with complete adult patient coverage from Finnish University Hospitals. The patient cohort includes exceptionally detailed clinical and health-economic data, with a 4-year follow-up. These data are essential for understanding the current management of hemophilia and for developing treatment practices in the future. The study is a collaborative effort by Helsinki University Hospital, Aalto University, and MedEngine Oy.
The initial results presented at NordCoag 2017 focused on the treatment type and bleeding rate among patients with haemophilia A and B. The results showed that 30% of severe hemophilia A, and 40 % of severe hemophilia B patients did not have any bleeds during the 4-year follow-up period. The median annual bleeding rate was within recommendations but several patients had over 10 bleeding episodes per year.
Further analyses are currently underway. The results will provide important new insights into real- world clinical management, treatment outcomes, health care utilization, and costs of hemophilia A and B.
Ventola H, Jokelainen J, Ylisaukko-oja T, Linna M, Lepäntalo A, Lassila R. Characterization of prophylactic treatment of hemophilia A and B in real-life: a 4-year follow-up study in Finland. Presented as poster in Nordic Coagulation Meeting in Finland on 31.8–2.9.2017.