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Fewer visits to the ER, better compliance with preventing complications and the ability to self-administer medication are some of the benefits experienced more by Hoosiers who seek bleeding disorder treatment at a Hemophilia Treatment Center (HTC) than those who go elsewhere. This is true despite these patients being more likely to have severe hemophilia. These significant findings and more can be found in the complete Indiana-focused study, titled “Population-based surveillance of haemophilia and patient outcomes in Indiana using multiple data sources.” Modeled after the influential epidemiological surveillance project conducted by the Centers for Disease Control and Prevention (CDC) in the late 1990s, this paper was recently published in the international journal Haemophilia and describes key findings from the Indiana Hemophilia Surveillance Project (IHSP). HTCs are health care centers that specialize in the comprehensive care of rare and complex bleeding disorders. To receive a federal designation as an HTC, facilities must demonstrate deep expertise for treating these complex conditions. Indiana Hemophilia & Thrombosis Center (IHTC) is Indiana’s only federally-designated Hemophilia Treatment Center. The new study involved analyzing de-identified medical records to determine diagnoses of hemophilia and treatment sought within the state. The severity of each patient’s hemophilia was noted, as well as where they sought care, how often and why. “The findings support the high quality of care provided by the federally recognized network of HTCs across the country, particularly in Indiana,” said Dr. Amy Shapiro, IHSP member and co-founder of IHTC. “This study re-enforces the messaging of HTCs, the CDC, and the National Hemophilia Foundation for the past 20 years – if you’re not being seen at an HTC, you’re not receiving the best care.” What’s more, the IHSP found that more hemophilia patients in Indiana are being cared for at an HTC compared to 20 years ago. “What the study found is hemophilia is more common in Indiana and is likely more common throughout the U.S. than it was 20 years ago,” explained Chris Roberson, IHSP member and Director of Compliance & Community Programs for IHTC. “This is also likely because care has improved, so patients are living longer and then having more children.” Despite those patients with hemophilia seeking care at an HTC usually having a more severe form of the disease, they have better outcomes. Patients are 47 percent less likely to visit the emergency room, and they are more likely to be able to self-administer their medication to prevent bleeding, rather than only taking it after they’ve experienced a bleed. About IHTC In 1998, nationally and internationally recognized experts Amy Shapiro, M.D. and Anne Greist, M.D. founded the Indiana Hemophilia and Thrombosis Center (IHTC). As IHTC expanded, it became one of the nation’s largest hemophilia treatment centers – and, as experts in the care of bleeding disorders, the only center in Indiana to receive federal designation. Now, IHTC delivers patient- and family-centered, comprehensive care for hemophilia, thrombosis, von Willebrand disease, sickle cell disease, and other bleeding and clotting disorders, including rare conditions. IHTC began with a vision for a center where patients and families affected by blood disorders could receive the best treatment. With extensive experience in hematologic disorders and depth of specialization in the field, our doctors, nurses, and specialists are focused on improving quality of life for our blood disorder patients and their families. For more information, visit ihtc.org.

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