Quality data are extremely useful in advocating for better care for people with bleeding disorders. This Fact Sheet introduces the rationale for data collection, the criteria for quality data, the keys for successful quality data collection, and examples of how quality data collection can provide the foundation of effective advocacy.
Also Available In: Japanese Access to a comprehensive hemophilia treatment centre (HTC) is a critical component of care. This fact sheet outlines how HTCs are set up and the ways in which they improve the overall health and well-being of patients with bleeding disorders.
Also Available In: Japanese Patient registries are crucial for monitoring trends in health, allocating resources, organizing and tracking distribution of treatment products, and improving the purchasing process on a national scale.
Also Available In: Japanese Access to home treatment reduces the economic impact on healthcare systems and improves the quality of life for both the person with hemophilia and his family.
Also Available In: Japanese Patients receiving comprehensive hemophilia care have a lower mortality rate and a lower hospitalization rate for bleeding complications than those treated outside a hemophilia treatment centre
Also Available In: Japanese Treating people with hemophilia with safe, regulated plasma-derived factor concentrate directly reduces the social and economic impact of this bleeding disorder on the patient as well as the amount of long-term support required from family, community, and government.
Also Available In: Japanese This fact sheet demonstrates the benefits of providing basic treatment and care to people with hemophilia. Adequate care includes access to a hemophilia treatment centre and to treatment products, and education for healthcare providers, patients, and families.