Free papers: Data collection and patient outcomes | Virtual Summit 2020


Year: 2020

Language: English

Author(s): World Federation of Hemophilia

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Additional Information

In this session from the WFH 2020 Virtual Summit, Mayss Naccache, Emily Ayoub, Toong Youttananukorn and Ellia Tootoonchian discuss:

  • “The World Federation of Hemophilia World Bleeding Disorders Registry – 2 years update”
  • “Data is the new currency: The World Bleeding Disorders Registry Data Quality Accreditation Program”
  • “Report on the Annual Global Survey – 20 years on”


The WFH does not engage in the practice of medicine and under no circumstances recommends particular treatment for specific individuals. For diagnosis or consultation on a specific medical problem, the WFH recommends that you contact your physician or local treatment centre. Before administering any products, the WFH urges patients to check dosages with a physician or hemophilia centre staff, and to consult the pharmaceutical company’s printed instructions.

The WFH does not promote any particular pharmaceutical product and any mention of any commercial brand in this presentation is strictly for educational purposes.