Article ; Online: The World Federation of Hemophilia World Bleeding Disorders Registry: insights from the first 10,000 patients.
Research and practice in thrombosis and haemostasis
2023 Volume 7, Issue 8, Page(s) 102264
Abstract: Background: The prevalence of hemophilia varies globally, with close to 100% of patients diagnosed in high-income countries and as low as 12% diagnosed in lower-income countries. These inequalities in the care of people with hemophilia exist across ... ...
| Abstract | Background: The prevalence of hemophilia varies globally, with close to 100% of patients diagnosed in high-income countries and as low as 12% diagnosed in lower-income countries. These inequalities in the care of people with hemophilia exist across various care indicators. Objectives: This analysis aims to describe the clinical care outcomes of patients in the World Bleeding Disorders Registry (WBDR). Methods: In 2018, the World Federation of Hemophilia developed a global registry, the WBDR, to permit hemophilia treatment centers to collect clinical data, monitor patient care longitudinally, and identify gaps in management and treatment. Results: As of July 18, 2022, 10,276 people with hemophilia were enrolled from 87 hemophilia treatment centers in 40 countries. Nearly half (49%, Conclusion: Data reveal large treatment and care disparities between socioeconomic groups, showing improvements when prophylaxis is initiated to prevent bleeding. Overall, care provided in low-income countries lags behind high-income countries by up to 40 years. Limitations in the interpretation of data include risk of survival and selection bias. |
|---|---|
| Language | English |
| Publishing date | 2023-11-20 |
| Publishing country | United States |
| Document type | Journal Article |
| ISSN | 2475-0379 |
| ISSN (online) | 2475-0379 |
| DOI | 10.1016/j.rpth.2023.102264 |
| Database | MEDical Literature Analysis and Retrieval System OnLINE |
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