Prevention of the Complications of Bleeding Disorders Through HTCS

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DESCRIPTION (provided by applicant): Hemophilia is an inherited bleeding disorder resulting from a deficiency of coagulation factor VIII or factor IX and von Willebrand Disease (VWD) is an inherited bleeding disorder resulting from decreased or abnormal von Willebrand protein. These bleeding disorders result in both spontaneous and trauma-induced bleeding. The purpose of this project is to prevent complications of bleeding disorders through the network of Region hemophilia treatment centers (HTCs). Consisting of 15 HTCs in DE, MD, PA, VA, WV, and DC Region III serves 3,061 individuals with bleeding disorders. The principal investigator and significant contributors for this project have extensive experience in caring for individuals with bleeding disorders and are supported by a multi-disciplinary team. Each HTC is a specialty, prevention, diagnostic and treatment program providing assessment, education, research, surveillance, outreach, consultation, and management to children, adolescents, and adults with bleeding disorders. Comprehensive care has been shown to decrease mortality n men with hemophilia. Building on this success and using data through the CDC's Universal Data Collection study, this network is poised to answer key questions related to optimal care and prevention strategies for patients with inherited bleeding disorders. Working collaboratively with the nationwide system of HTCs, the Region III network will foster the understanding of health promotion and prevention of disease, injury and disability by the following Specific Aims: 1) To enhance prevention activities and improve outcomes by: expanding Region III HTC participation in the UDC study and utilizing data collected to address research questions, including: a) Does rural or urban residence impact UDC participation and utilization of HTC resources? b) Do patients with moderate hemophilia have worse joint function than patients with severe disease on primary or modified primary prophylaxis? 2) To maintain the regional network of HTCs to allow data collection and implementation of prevention strategies by: providing comprehensive care to reduce complications from bleeding disorders; developing programs to expand the HTC patient populations, including women and minorities; facilitating training resources for new and established HTC staff; and providing educational resources for other medical providers. 3) To implement DC supported regional activities through the University of Pennsylvania Core Center to collaborate with a national network of Core Centers to implement the objectives of these project activities and studies by: facilitating communication between the HTCs; maintaining a Regional Executive Committee; organizing an annual Regional Meeting; providing oversight to the subcontracting HTCs; serving as a liaison between the DC, Maternal and Child Health Bureau, National Hemophilia Foundation and HTCs; sharing research data throughout the nationwide HTC network; and participating in the CDC Coordinating Committee.