Comprehensive hemophilia diagnostic and treatment centers - background: since 1976, the maternal and child health bureau has funded a regionalized system of care to provide multidisciplinary…

Comprehensive hemophilia diagnostic and treatment centers - background: since 1976, the maternal and child health bureau has funded a regionalized system of care to provide multidisciplinary services to persons with bleeding disorders to ensure coordinated services throughout the individual's lifespan and to facilitate access to care to a diverse population over broad geographic areas. In 2012, hrsa provided funding to athn to house the first national hemophilia program coordinating center (nhpcc) to establish national priorities, standardize care across the network and track quality improvement over time. The nhpcc has since built a robust infrastructure and maintained the collaboration necessary for the creation of a coordinating center with the capacity to transform the segmented network of 8 regional programs into an integrated and cooperative system to improve access, quality and cost of care for individuals with hemophilia and related bleeding disorders or clotting disorders. Methodology: the nhpcc will expand our existing foundation to improve support of the RHN and strategic national goals and will focus on the following overarching goals in the next cooperative agreement period: 1) continued provision of the nhpcc reference hub, an online, shared workspace for both regional and HTC staff to share best practices and ongoing grant project activities. 2) continued maintenance and provision of athn systems' centralized data system and repository containing grant data, which enables authorized RHN/nhpcc users to create and disseminate data reports. 3) oversight of a national quality improvement project in collaboration with the eight regional hemophilia networks (rhns) for increasing the number of individuals 12 years and older seen in a comprehensive care clinic that have a healthcare transition plan. 4) ongoing tracking of bleeding disorder outcomes relative to HP2030 goals - evaluation of joint bleed reduction and a plan for communication and dissemination to regional leadership, HTC staff, as well as patients. 5) continued provision of technical assistance (TA) to hemophilia treatment centers (htcs), and 6) outreach to underserved populations as identified by the RHN and htcs. Evaluation: the impact of nhpcc activities will be assessed by an external evaluator. Nhpcc progress and outcomes will evaluated through the collection of key indicators established by the nhpcc in conjunction with the rhns and collected through athn systems and the CDC's community counts project.