Research and Data Collection

The WFH Research & Education 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.

WFH data collection programs include the WFH Annual Global Survey, the WFH World Bleeding Disorders Registry (WBDR), and the WFH Gene Therapy Registry (GTR).

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 around the world and their access to care. 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 data are reported every year through the WBDR Data Report.
  • The WFH Gene Therapy Registry (GTR) is a longitudinal, prospective patient registry which will include all people with hemophilia who receive gene therapy. This registry is currently in development and will be launched in 2021.

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 and HTC Support

The WFH provides support to encourage the collection and use of data for research through the HTC Funding Program and the Research Support Program.

  • The WBDR HTC Funding Program aims to provide funds to support data collection activities at HTCs in low and lower-middle income countries.
  • The WBDR Research Support Program is open to HTCs participating in the WBDR and encourages the use of data for a specific research question or project.



Charitable solicitations for the common purpose of WFH and WFH USA within the U.S. are conducted through WFH USA, a 501(c)3 affiliated entity.
 

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  • PMB 142
    911 Central Avenue
    Albany, New York
    United States 12206-1304 
    Tel.: 1-877-417-7944