After a successful pilot, the World Federation of Hemophilia (WFH) is pleased to announce the launch of the World Bleeding Disorders Registry (WBDR). Over the next several months, selected hemophilia treatment centers (HTCs) from around the world will be invited to participate in this patient registry.
The WBDR is a web-based data entry system that provides a platform for a network of HTCs to collect uniform and standardized data on people with hemophilia. It will also be used to guide clinical practice. This registry will provide the bleeding disorders community with a pooled data source for comparing treatments and clinical outcomes and for answering epidemiological research questions. It will also provide physicians a mechanism to track individual, longitudinal patient data to assist in clinical management.
Combined with the aggregate data reported through the WFH Annual Global Survey, patient-level data reported in the WBDR will elevate treatment practices, patient outcomes and worldwide advocacy initiatives.
The importance of data
“Collecting data is an essential first step leading to improved care for people with hemophilia,” says Glenn Pierce, MD, PhD, chair of the WFH WBDR Steering Committee and 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 our vision of ‘Treatment for All.’”
Participation of HTCs from all countries, including the US, will continue to be an important component of the WBDR. Because hemophilia is rare, international collaboration among countries and pooling of data from patients globally is the only way to achieve a sufficient sample size to enable complex epidemiological and clinical research. As a global organization with access to a network of 134 national member organizations (NMOs) and relationships with more than 1,000 HTCs, the WFH is uniquely positioned to develop such a registry.
Strategic implementation process
After the success of the pilot study, the WBDR is moving to full-scale implementation.
“We are planning for the participation of at least 200 HTCs from more than 50 countries and at least 10,000 patients during the first five years,” says Pierce. “Our aim is to have the WBDR represented by patients from around the world and from all levels of access to care.” The WFH is working with its regional managers, NMOs, HTCs and patients to identify centers that will be invited to join the WBDR, which will be rolled out in phases over the next three years.
If your HTC or community is interested in participating in the WBDR, please contact us at [email protected]g.
The WFH thanks its sponsors for funding the development of the WBDR pilot study: Bayer, Grifols, Shire and the Hemophilia Center of Western Pennsylvania.