Health Resources and Services Administration: National Hemophilia Program Coordinating Center

Applicants must have significant familiarity and/or experience with hemophilia and clotting disorders, quality assessment and improvement, public health, and primary care; and collaboration with other programs and organizations for individuals with bleeding and clotting disorders and their families. Any applicant that can serve in a national capacity to coordinate services among the regional collaborative activities is eligible to apply. Applicants may NOT apply concurrently to become the lead organization for funding as both the National Hemophilia Program Coordinating Center (NHPCC) (HRSA-12-135) and a RHN (HRSA-12-133). If an applicant does apply for both funding opportunities, they will be considered non-responsive and both applications will be disqualified. RHN applicants are allowed to be included as partners of any applicants for the National Hemophilia Program Coordinating Center (HRSA-12-135).

Program goals for the NHPCC include:

1) Providing overall coordination of activities undertaken by the coordinating center and the RHN to facilitate uniformity and a standard of care, accessibility and dissemination of bleeding and clotting disorders resources, genetics resources, services and information.
o Providing technical assistance to the RHN regarding developing a coordinated comprehensive needs assessment and translation of that needs assessment. This technical assistance should include, but not limited to, criteria that will be used to assess service components, procedures for qualitative and quantitative measures, benchmarking and development of logic models.
o Developing and implementing a process with the RHN to set goals and priorities for the National Hemophilia Program that can be measured and evaluated over time, both regionally and nationally, using the results of the eight regional needs assessments.
o Developing and implementing a national evaluation plan that establishes key indicators to monitor progress toward meeting these National Hemophilia Program goals.
o Providing an ongoing forum that includes expertise in hematologic and genetic medicine for timely, interactive communication between key stakeholders (for example, by working with the NHF, Medical and Scientific Advisory Board, Committee of Ten-Thousand; American Thrombosis and Hemostasis Network , Department of Health and Human Services’ Advisory Committee On Blood Safety and Availability (ACBSA); professional hematologic and genetic medicine and policy organizations, the National Council of State Legislators, the National Governor’s Association, the private sector and the media), for the analysis, formulation and proposal of policies relevant to the delivery, financing, and reimbursement of hematologic services.
o Engaging in collaborative efforts (including research) with Centers for Disease Control and Prevention’s (CDC) and National Institutes of Health’s (NIH), MCHB funded programs including but not limited to the Regional Genetics and Newborn Screening Collaboratives, the Newborn Screening Technical Assistance Center and the Clearinghouse of Newborn Screening Information.

To optimize the impact of current scientific knowledge, advances in genetic medicine and services need to be integrated into activities that directly influence the health of individuals with hemophilia and/or other bleeding and clotting disorders. The ability to do this depends on maintaining full access to health care and social services through regional cooperation and collaboration. In order to enfold the Comprehensive Hemophilia Diagnostic and Treatment program into current genetic services practices, MCHB expects the successful applicant to take substantial steps to improve the utilization of the latest scientific knowledge – including genetic medicine and knowledge about health promotion, disease causation and illness management-into health care practices for persons with hemophilia and other bleeding and clotting disorders.

This integration will require a commitment to sharing old and new resources to address identified gaps relative to the provision of care. The successful applicant should structure regional networks to encompass partnerships between hematologists and their professional organizations, medical homes and primary care providers and their primary care professional organizations, integration of population-based screening, genetic risk assessment, health promotion and disease prevention strategies. The applicant should use strategies to address hemophilia and other bleeding disorders as chronic conditions. This will require the regional network’s core hemophilia treatment centers to work together with the other treatment centers across the region and to develop and identify core components for assessment and evaluation within and across regions.