Global Registry for Patients with Hemophilia A, Hemophilia B, and von Willebrand Disease

What this Trial Is About

Researchers are conducting the World Bleeding Disorders Registry WBDR, an international observational study focused on people diagnosed with Hemophilia A, Hemophilia B, and von Willebrand Disease. The registry aims to collect standardized, real-world patient data from treatment centers worldwide to better understand these bleeding disorders and inform clinical care. This global effort involves collaboration between the World Federation of Hemophilia, Karolinska Institute, and Health Solutions. The WBDR involves enrolling patients through more than 200 Hemophilia Treatment Centres across over 50 countries. Participating centers must have reliable internet access and resources to enter and maintain patient data over time. The registry collects anonymous information about the disease type, severity, symptoms, and treatments experienced by patients. This study is ongoing and plans to follow patients long-term to gather comprehensive data from diverse healthcare settings. Participants contribute data through their treatment centers, which input information into the registry platform. Researchers track key outcomes such as the number of patients registered, the number of participating centers, and countries involved over five years. This large-scale data collection helps address scientific and clinical questions about bleeding disorders globally. Participation does not involve treatment changes but supports advancing knowledge through observation and data sharing.

World Bleeding Disorders Registry