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 Bishesh Sharma Poudyal, MD, of the Civil Service Hospital, in Kathmandu, Nepal. As of this month, the Civil Service Hospital has enrolled nearly 200 patients in the WBDR.
How did you learn about the WBDR?
I learned about the WBDR when I attended the WFH Humanitarian Aid Program workshop in Myanmar. To be very honest, I was already looking for similar kind of software to keep records of my patients so the timing was perfect!
How did you find the process of starting the WBDR?
Immediately after returning back from Myanmar, I talked with our hospital administrators and briefed them about the WBDR. Since then, the whole process of starting the WBDR has been smooth and we are delighted to be a part of it. The WFH helped us by providing all the required documents to get approval from our institutional review board (IRB).
What was your biggest challenge when you started, and how did you overcome it?
The biggest challenge was to find a qualified person to enter the data. At first, I tried my best to enter the data myself but it just wasn’t realistic for me. I am the only full time hematologist in the hospital and most of the time I am very busy in clinics and with other academic activities. So, I coordinated with the Nepal Hemophilia Society and I trained one of my junior colleagues and one of their employees, and now they are entering the data for us. I intend to train some of my nursing staff too so they can help support the process. One issue for us, is that at times, we have poor internet connection which makes uploading the data a bit more challenging.
Do you have support from the WFH when you need it?
We have always received the support from the WFH when we needed it. In this particular case they took the time to train us on how to use the WBDR database, and they have worked with my team directly, helping them ensure our data is of the highest quality.
Why do you feel it’s important to be involved with the WBDR?
I highly recommend other centres to join the WFH World Bleeding Disorders Registry. Once an HTC is registered with the WBDR, it becomes easier to convince the government to help to buy clotting factor because you have data to show. This is especially true of a developing nation like Nepal.
To find out more about the WFH World Bleeding Disorders Registry (WBDR), please click here.