Evidence-based Advocacy

Data collected through the WFH Annual Global Survey and the WFH World Bleeding Disorders Registry are used to create global and country specific reports, charts, infographics, and tools that will help strengthen advocacy messages.

Infographics, based on data from the latest Annual Global Survey and the World Bleeding Disorders Registry are available for download as an image, a PDF or as slides and can be used for presentations and advocacy work.

The WFH has developed a new data collection system, which includes real-time, automated validation, customizable queries and the output of raw data for analysis with various software solutions. This system has allowed us to continue to improve the quality and comprehensiveness of the data we collect each year.

View and download graphs of Annual Global Survey data developed using our new data collection system.

The World Federation of Hemophilia (WFH) Annual Global Survey mini reports are advocacy tools that provide more in-depth perspective and context to Annual Global Survey data.

This eLearning program, made up of three modules, is designed to introduce you to the collection and use of data in bleeding disorders.

Data collection is a fundamental part of supporting care for those with inherited bleeding disorders. The overall objectives of the data collection course are to:

  • Enhance global data collection, research, and analysis for the purpose of improving treatment and supporting health planning
  • Empower national member organizations (NMOs) to better advocate and support the improvement of care for people with inherited bleeding disorders

Peer-reviewed publications on global data and patient registries relevant to hemophilia and other bleeding disorders are also available.

Iorio, A., Stonebraker, J. S., Brooker, M., Soucie, J. M. and the Data and Demographics Committee of the World Federation of Hemophilia (2017), measuring the quality of haemophilia care across different settings: a set of performance indicators derived from demographics data. Haemophilia, 23: e1–e7. doi:10.1111/hae.13127.

Coffin D, Herr C, O'Hara J, Diop S, Hollingsworth R, Srivastava A, Lillicrap D, van den Berg HM, Iorio A, Pierce GF. World bleeding disorders registry: The pilot study. Haemophilia. 2018 Feb;e113-e116.