Research and Data Collection

The WFH Research and Public Policy department works to enhance both data collection and research activities around the world with the aim of creating better evidence to improve the clinical management of patients with bleeding disorders around the world.

WFH data collection programs include the WFH Annual Global Survey, the WFH World Bleeding Disorders Registry (WBDR), and the WBDR Research Support Program.

Data Collection

  • The Annual Global Survey is a yearly cross-sectional survey of WFH national member organizations (NMOs) that provides country-level data on the number of identified patients and their access to care, around the world. Data are reported annually through the WFH Report on the Annual Global Survey.
  • The World Bleeding Disorders Registry (WBDR) is a longitudinal, prospective patient registry, which provides patient level clinical and outcome data. The WBDR started enrolling patients in January 2018 and the first WFH WBDR Data Report was issued in May 2019.

Combined, these data collection platforms allow the WFH to provide a comprehensive overview of the state of care around the world. These data are available to the entire bleeding disorders community for research and advocacy purposes.

Research

The WFH provides small research support funding to encourage the use of WBDR data through the WBDR Research Support Program.

  • The WBDR Research Support Program is an annual competition open to HTCs participating in the WBDR.

WFH Network

WFH USA
WFH USA advances the global mission of the WFH in the United States.
Congress & Meetings
The latest information about WFH meetings and events.
eLearning Platform
Easy access to all WFH bleeding disorder resources.
Hemophilia World News
Access news about the WFH and bleeding disorders care around the world.

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  • 1425, boul. René-Lévesque Ouest
    Bureau 1200 
    Montréal, Québec H3G 1T7 Canada
    Tel.: +1 (514) 875-7944
    Fax: +1 (514) 875-8916
    Email: wfh@wfh.org

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