WFH World Bleeding Disorders Registry pilot study complete

The objective of the World Federation of Hemophilia (WFH) World Bleeding Disorders Registry (WBDR) is to develop a database of high quality, real world data on a large population of patients with hemophilia. Now, after nine months, the pilot study has come to a successful closure. The data and evidence generated from the WBDR will be used to advance the understanding of hemophilia worldwide.

A pilot study was designed to assess the feasibility of conducting a patient registry in countries with varying levels of care. Now, after nine months, the pilot study has come to a successful closure.

There were 26 hemophilia treatment centres (HTCs)—representing 25 countries—that successfully received ethical approval, recruited patients, and entered patient data into the web-based registry. The results of the pilot study are currently under evaluation. Pending approval by the WFH Board of Directors, the full WBDR will launch in mid-2017.

The WFH extends their sincerest gratitude to the participating HTCs. Their insight and support throughout every step of the process was greatly appreciated.