Abstract Number: PB0854
Meeting: ISTH 2020 Congress
Background: In 1998, the World Federation of Hemophilia (WFH) started the Annual Global Survey (AGS) as a surveillance project on people with bleeding disorders. This has since grown to be a valuable monitoring tool, providing impactful information to the bleeding disorders community.
Aims: The 20th anniversary of the Report on the AGS included the patterns and trends over time, as well as the progress in patient identification, treatment and care globally.
Methods: The Report on the AGS is an annual cross-sectional survey. Each year WFH National Member Organizations (NMOs) are asked to complete the survey including questions on number of identified patients, level of hemophilia care and factor use for patients with hemophilia A and B, von Willebrand disease and other bleeding disorders, in their country. The survey in 2019 was sent to 140 NMOs.
Results: In 2019, a record high 125 countries participated and a total of 337,641 patients with bleeding disorders were identified. Treatment of bleeding disorders continues to advance and as a result, in 2019, the AGS began to differentiate the reporting of standard half-life and extended half-life products, allowing the data to be more reflective of the changing landscape in treatment. Factor use in high-income countries has grown at a much faster rate than in lower-income countries and differences in levels of care still exist. Between 2002 and 2019, the median factor VIII IU per capita increased from 3.88 to 6.19 among high income countries, and from 0.01 to 0.04 among low income countries.
Conclusions: For over 20 years, the AGS has been an important source of data on bleeding disorders and the data continues to be effectively used for advocacy and priority setting leading to better care of people with bleeding disorders around the world.
To cite this abstract in AMA style:Tootoonchian E, Stonebraker J, Iorio A, Byams V, El Ekiaby M, Makris M, O'Hara J, Chambost H, Weill A, Pierce G, Baumann A, Coffin D. The Annual Global Survey Continues to Close the Gap in Data Collection of Bleeding Disorders [abstract]. Res Pract Thromb Haemost. 2020; 4 (Suppl 1). https://abstracts.isth.org/abstract/the-annual-global-survey-continues-to-close-the-gap-in-data-collection-of-bleeding-disorders/. Accessed February 21, 2024.
« Back to ISTH 2020 Congress
ISTH Congress Abstracts - https://abstracts.isth.org/abstract/the-annual-global-survey-continues-to-close-the-gap-in-data-collection-of-bleeding-disorders/