Resources » Data & Demographics workshop | WFH World Congress 2022
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Year: 2022

Language: English

Author(s): World Federation of Hemophilia

Format: Congress recordings

Data & Demographics workshop | WFH World Congress 2022

ADDITIONAL INFORMATION

In this workshop from the WFH 2022 World Congress, listen to Miguel Escobar, Alfonso Iorio, Donna Coffin, Ellia Tootoonchian, Emily Ayoub, Toong Youttananukorn, Mark Skinner, Mayss Naccache, Thi Mai Nguyen, Jeff Stonebraker, and Declan Noone address improving patient outcomes through data.

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.

In this workshop from the WFH 2022 World Congress, Miguel Escobar (United States), Alfonso Iorio (Canada), Donna Coffin (Canada), Ellia Tootoonchian (Canada), Emily Ayoub (Canada), Toong Youttananukorn (Canada), Mark Skinner (United States), Mayss Naccache (Canada), and Thi Mai Nguyen (Vietnam) discuss the WFH Annual Global Survey, the World Bleeding Disorders Registry, patient reported outcomes through myWBDR, PROBE, the WFH Gene Therapy Registry, and regional experience in Vietnam.

In this workshop from the WFH 2022 World Congress, Ellia Tootoonchian (Canada) and Jeff Stonebraker (United States) discuss tools for advocacy and indicators of care.

In this workshop from the WFH 2022 World Congress, Alfonso Iorio (Canada) and Declan Noone (Ireland) discuss the practical use of data and combining World Bleeding Disorder Registry (WBDR), myWBDR, Annual Global Survey & Quality of Life data to build an advocacy message or develop a policy.

RELATED RESOURCES

Documents and PDFs

WBDR 2020 Data Report

The World Bleeding Disorders Registry (WBDR) 2020 Data Report provides aggregate data on more than 7,000 people with hemophilia around

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