The WFH World Bleeding Disorders Registry (WBDR) is a web-based data entry system that provides a platform for a network of hemophilia treatment centres (HTCs) to collect uniform and standardized data on people with hemophilia. The goal is to advance the understanding and care of people with hemophilia worldwide and support evidence-based advocacy initiatives.
The WBDR launched in 2018, and, as of this month, over 3,800 patients are enrolled in the registry. Last year, the WFH published the WBDR 2018 Data Report—and the results point to an effective endeavour, well on its way to reaching its goal of enrolling 10,000 patients from 200 HTCs in 50 countries within the first five years.
The WFH has heard many inspirational stories from HTCs who have joined the WBDR. These stories describe the rewards—and sometimes the challenges—of participating in a global initiative that can have a real impact on the bleeding disorders community.
The WFH has asked several HTCs currently participating in the WBDR to share their experiences with—and offer some helpful tips to—HTCs who are not yet part of the WBDR. Today, we hear from Theresa Nwagha, MD, Coordinator, Southeast University of Nigeria Teaching Hospital.
How did you learn about the WBDR?
I first learnt about WBDR at the WFH regional medical symposium in Addis Abba, Ethiopia, in 2017, where the speakers discussed the centres that were involved in the WBDR pilot program. Centres were encouraged to start the process of getting ethical clearance so that they could participate in the project. Our HTC became the first to sign up in Nigeria and the West African region.
How did you find the process of starting the WBDR?
The process was seamless. The WBDR team was very available and always ready to walk us through the different processes involved. There were conference calls for training us, and numerous emails to ensure the centre understood the importance of following due ethical protocol before starting.
What was your biggest challenge when you started, and how did you overcome it?
Our biggest challenge was having a regular, dedicated internet connection so patient details could be captured when they visit the hospital. We overcame this by procuring a dedicated internet modem that can handle up to ten devices. This allowed us to ensure that patient data are captured during the patient’s visit.
Do you have support from the WFH when you need it?
Oh, yes! I for one am very impressed with the dedication and commitment of the WFH team. They are ever so ready and available to provide support when it needed. Kudos to the team.
Why do you feel it’s important to be involved with the WBDR?
The importance of the WBDR cannot be overemphasized. Now every patient counts. My patients count, too. My team has access to all our patients’ data at a click of a button. The WBDR has helped us have a local registry of our patients. It has also provided us with an important advocacy tool to draw attention to people with hemophilia (PWH) and other bleeding disorders in my community, and in Nigeria as a whole.
To find out more about the WFH World Bleeding Disorders Registry (WBDR), please click here.
The WFH thanks our:
Visionary Partners: Sobi, Takeda
Collaborating Partners: Bayer, CSL Behring, Grifols, Pfizer, and Roche