The World Federation of Hemophilia World Bleeding Disorders Registry: insights from the first 10,000 patients.

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. N

SUBMITTER: Coffin D 

PROVIDER: S-EPMC10772874 | biostudies-literature | 2023 Nov

REPOSITORIES: biostudies-literature