A number of national, regional, and international registries have been established for the purpose of monitoring specific aspects of hemophilia care. As a global organization with access to a network of hemophilia treatment centres (HTCs) and patients in countries with varying levels of access to care, the WFH is uniquely positioned to develop systematic documentation of the care that people with hemophilia receive around the world.
The WFH has been successfully collecting and publishing aggregate demographic data on people with inherited bleeding disorders for over a decade through its Annual Global Survey.
The objective of the WFH Epidemiological Research Program is to develop a database of high quality, observational data on a large population of patients with hemophilia, which will be used to advance the understanding of hemophilia worldwide. This database, named the World Bleeding Disorders Registry (WBDR), aims to facilitate research by sharing data with the scientific community, allowing them to address important scientific and clinical issues, such as:
- Address gaps in evidence related to patient management practices for patients with hemophilia;
- Support advocacy initiatives aimed at improving diagnosis and access to care around the world;
- Allow the scientific community to address important clinical questions on diagnosis, access to care, treatment, and outcomes in patients with hemophilia.
For more information about the Epidemiological Research Program, contact us at email@example.com.
Universal Case Report Form
Updated March 2017