The Mid-Atlantic Region III Core Center is awarded grants by the Maternal and Child Health Bureau (MCHB) and the U.S. Centers for Disease Control and Prevention (CDC) through the American Thrombosis and Hemostasis Network (ATHN).
Maternal and Child Health Bureau grant
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 Hemophilia Treatment Center (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.
Life Course Theory
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:
- Form a genetics sub-committee
- Increase collaboration with our Genetics and Newborn Screening Collaborative, which is New York-Mid-Atlantic Consortium for Genetics and Newborn Screening Services
- Develop literacy-level appropriate materials for genetic education and a protocol for the delivery of genetic education
- Work with regional HTCs to increase the number of patients with documented genetic education in their medical records.
- Develop a tool to track female relatives at risk for carrier status (FRUIT).
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 original Regional Monitoring Survey, developed by Penn Comprehensive Hemophilia Program, has been revised and expanded twice, most recently in an effort to standardize information and facilitate data analysis.
- All programs and conferences for patients have appropriate evaluation and pre- and post-tests to gauge the knowledge gained over the course of the program.
- Site visits are conducted with each HTC at least every three years in addition to visits for technical assistance and program evaluation at the time of any significant HTC staff change.
- The Core Center participates with other Regional Core Centers throughout the country and the National Hemophilia Program Coordinating Center (NHPCC) to collect data and evaluate the region based on five Healthy People 2020 measures.
- The Core Center will form a work group and identify an expert to lead the evaluation process. The Core Center will communicate with the regional HTCs and manage the evaluation process for the region.
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 Core Center collects detailed program Income reports from all participating HTCs annually, requiring signatures of authorized institution officials and HTC medical directors.
- Mid-Atlantic Region III developed a review process for the use of 340B Program Income for research, based on Health Resources and Services Administration (HRSA) requirements. Six Mid-Atlantic Region III projects have been approved by HRSA.
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.).
National Hemophilia Program Coordinating Center
The American Thrombosis and Hemostasis Network (ATHN) was named the first National Hemophilia Program Coordinating Center (NHPCC). ATHN will partner with more than 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.
American Thrombosis and Hemostasis Network: CDC Surveillance Project
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:
- The Population Profile will provide basic demographic information about the full scope of patients with bleeding and clotting disorders followed by HTCs in the U.S. Patients eligible for inclusion in the Population Profile are males or females, with hemophilia A or B, von Willebrand disease or other platelet or bleeding disorders, deep vein thrombosis (DVT) or pulmonary embolism (PE) with a qualifying visit to an HTC during the grant time period. The data that is ultimately shared with the CDC is de-identified.
- The Registry will gather more information on a smaller sub-set of patients. Patient authorization or consent will be required and most HTCs will submit this protocol to their IRBs for approval. The initial enrollment form will be more comprehensive and a shorter annual update form will be used for subsequent years.
- Blood samples for inhibitors and viral screening will be required.
- The Registry protocol was distributed to HTCs in July 2013 with expected enrollment starting in fall 2013.