WFH NETWORK

WFH World Bleeding Disorders Registry kick-off webinar and live training opportunities

On December 12, 2017, the WFH hosted a webinar for people across the globe interested in learning more about participating in the WFH World Bleeding Disorders Registry (WBDR), including hemophilia treatment centres (HTCs), WFH National Member Organizations (NMOs), and people with hemophilia. The goal of the webinar was to prepare for the kick-off of the WBDR program by providing an overview of the WBDR, presenting important information and processes for participating in the program and offering an opportunity for participants to ask questions.

The WFH launched the WBDR globally in January 2018—and  the information from the webinar is now available on the WFH eLearning platform. If you are a newly enrolled HTC, or a member of the global hemophilia community who is interested in learning more about the WBDR, this webinar is for you. To view a PDF of the webinar slides and download a recap of webinar discussion questions and answers, click here.

The success of the WBDR depends on the valuable involvement and support of HTCs, NMOs and people with hemophilia from around the world. These informative webinar materials are just one example of how the WFH provides ongoing support and training to HTCs and others in the WBDR community.

What else can you look forward to?

  • One-on-one support from the team through wbdr@wfh.org to answer questions on the HTC registration process or patient enrolment
  • Database training materials (from quick reference guides to webinars with a live demonstration of the WBDR database)
  • Patient discussion program tools (including patient brochures and posters available in English, French and Spanish)

All enrolled HTCs will be invited to an in-person WBDR Investigators Meeting on Monday, May 21 at the WFH 2018 World Congress in Glasgow, Scotland. This will be a chance for HTC representatives attending Congress to learn more on-site—directly from the WBDR team who will be there to support you. If you are planning on enrolling in the WBDR, please register before Congress (from May 20 to 24, 2018) to take advantage of this in-person training opportunity.

Together, we can help the WBDR reach its potential. If there are any other tools you might need to help you be successful in your program participation and patient discussions, we encourage you to reach out to us so we can help!

The WBDR team is available for any questions, so please feel to contact us at wbdr@wfh.org. We want to hear from you and can help you participate in the WBDR.

The WFH thanks the following partners for their valuable support of the WBDR:

Visionary Partners
Shire
Sobi

Collaborating Partners
Bayer
F. Hoffman-La Roche Ltd.
Grifols
Pfizer
Sanofi Genzyme