The World Federation of Hemophilia (WFH) Research and Public Policy team will be presenting two moderated posters at the WFH 2018 World Congress. Stop by the designated e-poster area in the Exhibit Hall of the Scottish Event Campus from 15:45 to 16:15 on Tuesday, May 22 to learn more about the WFH World Bleeding Disorders Registry and the WFH Annual Global Survey.
The WFH World Bleeding Disorders Registry
The WFH World Bleeding Disorders Registry (WBDR) is the only patient registry collecting standardized clinical data on people with hemophilia from around the world. The purpose is to strengthen our capacity to diagnose, treat and provide care. As a web-based data entry system, the WBDR provides a platform for a network of hemophilia treatment centres to collect uniform and standardized data on people with hemophilia. The registry brings together privacy-protected patient data from countries around the world, storing it in one central location.
The World Federation of Hemophilia Annual Global Survey: Low-dose prophylaxis
Through the Annual Global Survey, the WFH has been collecting national aggregate data on people with bleeding disorders since 1999. It is well established that prophylaxis is the gold standard for preventing bleeds and subsequent joint damage in persons with hemophilia. However, standard-dose prophylaxis requires more clotting factor concentrate than on-demand therapy and is not economically feasible in many countries. Such countries have started using lower doses of prophylaxis, to gain the benefits of prophylaxis treatment while keeping costs down. This poster reports on the countries using low-dose prophylaxis in 2016.