The World Federation of Hemophilia (WFH) World Bleeding Disorders Registry (WBDR) will go live with the enrollment of the first patient into the patient registry on January 26, 2018. This important initiative will set the standard for global patient care in hemophilia.
The WFH is proud to partner with the Karolinska Institute and Health Solutions Inc. for the development of the WBDR, an online web-based data entry system that will provide a platform for a network of hemophilia treatment centres (HTC) to collect uniform and standardized patient data, and guide clinical practice. People diagnosed with hemophilia A or B who are registered at a participating HTC are eligible to participate in the WBDR. Over the next 5 years, the WFH expects that 10,000 people with hemophilia from 50 countries will enroll.
This registry will provide the hemophilia community with a pooled data source for comparing treatments and clinical outcomes, and will help researchers answer epidemiological research questions. The WBDR will also provide physicians with a mechanism to track individual, longitudinal data on their patients, to assist clinical management.
The patient level data reported in the WBDR may assist in elevating treatment practices, patient outcomes and advocacy initiatives based on population-wide, evidence-based medicine. Importantly, the data collected will be a valuable resource for the development of advocacy initiatives aimed at governments and ministries of health around the world. By providing information about their disease course, patients can play an active role in helping researchers better understand hemophilia and improve the quality of care and treatment.
“Collecting data is an essential first step leading to improved care for people with hemophilia around the world,” says Glenn Pierce, MD, PhD, Chair of the WFH WBDR Steering Committee and member of the WFH Board of Directors. “Data will provide us with a picture of the current state of care worldwide, which will in turn support our efforts to achieve Treatment for All.”
Hemophilia treaters and treatment centres interested in participating in the WBDR should contact [email protected]. People with hemophilia interested in taking part in this initiative should speak with their doctor or HTC.
The WFH thanks the following partners for their valuable support of the WBDR:
F. Hoffman-La Roche Ltd.