April 17 is a World Hemophilia Day

Publication date: 17 april 2015

Every year on April 17, the World Hemophilia Day established by WHO is marked around the world to draw attention of the wider audience to the challenges faced by many patients with this ciondition. In June 2014, the National Hematology Society in collaboration with Hematology Scientific Centre and the technical support by Aston Group, initiated a project titled the Registry of Hemophilia with Inhibitors".

Nadezhda Zozulya MD, Chief of the Scientific and Advisory Department of Coagulation Disorders in Haematology Scientific Centre was made the Chief academic supervisor of the project.

The goal of the registry is to document natural history of hemophilia A and B in patients who developed inhibitors of any type, and outline remote treatment outcomes as they are correlated with the clinical guidelines used in hemophiliacs.

This, in turn, will allow evaluating safety profile of the drugs used for hemophilia with inhibitors,  treatment efficacy and consumption of health care resources.

During the first ten months of the registry operation, we collected and processed information on 177 patients, residing in 42 regions of Russia, who developed hemophilia with inhibitors, which accounts for 96% of the total population of patients with this condition.

Our current plan is to enrol all 100% patients in the project.

As of this moment, this is the only clinical registry of patients who developed inhibitors that provides extensive coverage of the patient population and comprehensive data on epidemiology and demographic characteristics of patients with hemophilia with inhibitors.