The World Bleeding Disorders Registry (WBDR) aims to provide a global platform for hemophilia treatment centres (HTCs) to collect standardized patient data. During the session at the Showcase Theatre, Donna Coffin, WFH Director of Research & Public Policy explained, “The WBDR has already surpassed its 5-year goal of functioning in over 50 countries and is on track to enroll 200 HTCs and register 10,000 patients.”
Speakers gave perspectives of the WBDR’s impact at a regional level. Daniela Neme, MD, Director of the Fundación de la Hemofilia (the Argentina Hemophilia Foundation), said “We joined the WBDR, not only to contribute to a global database, but also to obtain clinical tools to help standardize and evaluate treatment.”
Fifteen Malaysian HTCs have agreed to participate in the WBDR. Their delegates noted that prior to joining, there was little coordination between different HTCs and certainly a lack of treatment monitoring. WBDR membership in Malaysia has enhanced national data collection and improved advocacy.
The Czech National Haemophilia Programme Registry (CNHPR) opened in 2005 and aims to “regulate high-level care nationwide,” said Petra Ovesná on behalf of the CNHPR. Collaboration between the WBDR and the well-established CNHPR would be mutually beneficial. There are obvious security concerns when sharing data, so along with Health Solutions, CNHPR have embarked on a proof of concept study to ensure the process is safe and effective
Glenn Pierce, MD, PhD, WFH Medical board member, highlighted further gaps in the current evidence, especially for the development and management of rare complications, such as intracranial bleeds and pseudotumors. There is also a lack of data on gender and racial disparities. “Global harmonization of data and definitions is highly important,” said Pierce. Events can be collected and measured in the same way. An international database, such as the WBDR will enable the hemophilia community to study ultra-rare symptoms and answer important research questions.