Mid-Atlantic Region III has been awarded grants by the Maternal and Child Health Bureau (MCHB) and the Centers for Disease Control and Prevention (CDC) through the American Thrombosis and Hemostasis Network (ATHN).
The MCHB awarded the Core Center a five year Regional Hemophilia Network grant (6/1/12-5/31/17) to provide comprehensive care to patients with bleeding and clotting disorders served by Mid-Atlantic Region III HTCs. The grant also supports many new programs and activities for the Core Center and Regional HTCs to improve care for patients with inherited bleeding and clotting disorders including needs assessment, Life Course Theory training, genetic education, and evaluation of Regional HTCs.
The Core Center will conduct a Mid-Atlantic Region III needs assessment upon completion of the national level needs assessment that is being conducted now by the National Coordinating Center.
The Core Center provides training to all Regional HTC staff on Life Course Theory. The concept of life course theory will be incorporated into the plans and operations of Regional HTCs during the course of the grant.
The Core Center is working with the Regional HTCs to enhance genetic education among affected families and developing strategies to reach out to potential female relatives at risk. To do this, the Core Center will:
The Core Center works with Regional HTCs to ensure that services are delivered to patients and families in an appropriate and timely way, and to document adherence to grant requirements. The Core Center evaluates HTCs in several ways:
The federal funding agencies have strongly encouraged HTCs to participate in the 340B Program, which enables covered entities to stretch dwindling Federal resources as far as possible, to support comprehensive care and to expand services for patients and families. The Core Center provides technical assistance regarding 340B programs, serves as a liaison between the MCHB Project Officer and HTC staff, and closely monitors use of generated Program Income.
The New York Mid-Atlantic Consortium for Genetics and Newborn Screening Services (NYMAC) was founded in 2004 by the Genetics Services Branch of the Maternal and Child Health Bureau of HRSA. Mid-Atlantic Region III has begun a collaboration with NYMAC, focused on transition, emergency identification and medical home for patients with inherited blood disorders.
A project called the Medical Home Team Pilot Project is underway in collaboration with NYMAC, the New England Region and our colleagues in thalassemia and sickle cell disease. The goal is to develop tools that help patients easily choose which provider to contact (hematologist or PCP/pediatrician) depending on their symptoms and hematologic diagnosis. By creating unique tools for hemophilia, sickle cell disease and thalassemia, each can be specialized with the correct message for each set of symptoms (fever, cough, etc.).
The American Thrombosis and Hemostasis Network (ATHN) was named the first National Hemophilia Program Coordinating Center. ATHN will partner with over 130 ATHN affiliate HTCs, regional leadership, the National Hemophilia Foundation (NHF), patient advocacy groups, government partners, and others to guarantee a community-wide perspective on improving care for patients with hemophilia.
NHPCC is governed by the Steering Committee, Advisory Committee and Regional Leadership Committee. Danielle Deery, regional coordinator, sits on the Advisory Committee and Regional Leadership Committee. Regina Butler, regional director, also sits on the Regional Leadership Committee.
The CDC Public Health Surveillance Project is underway at the HTCs in our Region. The purpose of the project is to learn more about the bleeding disorders community by collecting and analyzing data to gain a broader understanding of our patients. The project has two phases for data collection: