WFH NETWORK

WFH Research and Data Collection Programs at the Resource Centre

Are you interested in learning more about the World Federation of Hemophilia research and data collection programs? A great way to get involved while at WFH 2018 World Congress is to visit the Resource Centre, where Research and Public Policy staff are ready to showcase the WFH World Bleeding Disorders Registry (WBDR) and the Annual Global Survey (AGS).

The WBDR is the only global registry collecting standardized clinical data on people with hemophilia. The real-world data coming from the WBDR strengthens our capacity to diagnose, treat, and care for people living with hemophilia. WBDR program staff are available with materials and computers so you can see the WBDR live! Learn more about requirements to participate, the ethics approval process and the ease of data-entry. You can also pick up a copy of WBDR patient discussion tools, including posters and patient brochures.

The online platform for the Annual Global Survey has been revamped and is ready for 2017 data collection. AGS data respondents are encouraged to stop by the booth to discuss their data submission and learn about updates in the 2017 survey. The 2016 Report on the Annual Global Survey available if you want to take a hardcopy home.

We look forward to seeing you at the WFH Resource Centre in the exhibit area, located in Hall 4 from Sunday, May 20 to Wednesday, May 23.