Strengthening hemophilia registries globally: Strategies to improve patient outcomes

Hemophilia is a genetic bleeding disorder characterized by a deficiency of clotting factor VIII or IX. Hemophilia registries are structured databases that maintain longitudinal data on people diagnosed with hemophilia. Hemophilia registries maintained at different levels serve multiple public health purposes, which can eventually improve the treatment outcomes and quality of life of the affected person. These registries can be maintained at the international level, national level, and at the regional/hospital level. Despite the immense utility of hemophilia registries in improving treatment outcomes, multiple challenges have been identified that could limit their scope and must be overcome. In conclusion, hemophilia patients can derive extensive benefits from the registries maintained at different levels. However, to optimize these benefits, we must adopt targeted, evidence-driven measures to tackle different concerns and move toward creating a robust and sustainable hemophilia registry worldwide.