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 was launched this year, and is on its way to reaching its goal of enrolling 10,000 patients from 200 HTCs in 50 countries within the first five years. In these first few months of this initiative, 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 Titilope A. Adeyemo, MD, Department of Haematology & Blood Transfusion, College of Medicine, Lagos University Teaching Hospital.
How did you learn about the WBDR?
I learned about the WBDR when I attended the WFH Regional Medical Symposium in Addis Ababa, Ethiopia, in September 2017. Before then, I was using Microsoft Excel to keep records of my patient data—but that method was not easy!
How did you find the process of starting the WBDR?
In December 2017, we received an invitation to join a kick-off webinar and learn more about the WBDR—its scope and plan, patient and data privacy regulations, steps for accessing HTC data in the WBDR, HTC requirements to participate, ethics approval process, timeline, and next steps. My colleagues and I participated in the webinar which further opened our eyes to the benefits of participating for both our medical practice and our patients. We immediately applied to join the registry and started the process of obtaining ethical approval. From there, things just took off. The whole process of starting the WBDR was smooth as the WFH made the process easy by providing all the required documents to get approval from our institutional review board (IRB). The WFH also supported us with quality data entry training.
What was your biggest challenge when you started, and how did you overcome it?
The biggest challenge for us is still an ongoing challenge: finding time to enter quality and complete data in real time in our ever-busy clinic. We are trying to establish a dedicated bleeding disorder clinic outside our very busy hematology clinic, which will hopefully make it easier for us to enter data into the registry. Another issue for us is that poor quality internet connections often makes real time data entry a bit challenging for us.
Do you have support from the WFH when you need it?
Always. The WFH has given us support every time we needed it. They have trained us and they are always ready to refresh our training to ensure that our data collection and data entry are always of the highest quality.
Why do you feel it’s important to be involved with the WBDR?
The WBDR helps us collect patient data in a uniform and standardized format such that it is easily analyzable. We can now easily describe the burden of bleeding disorders in our communities, support evidence-based advocacy initiatives and advance the understanding and care of our people with hemophilia. The WBDR will make it easier for us to convince our government to support people living with hemophilia and other bleeding disorders .
To find out more about the WFH World Bleeding Disorders Registry (WBDR), please click here.