Mid-Atlantic Region III Core Center for Federally Funded HTCs

A national network of more than 140 Hemophilia Treatment Centers (HTCs) is supported and funded by the Maternal and Child Health Bureau (MCHB) of the Health Resources and Services Administration (HRSA) and the Centers for Disease Control and Prevention (CDC). HTCs are specialized health care centers staffed by a team of doctors, nurses, social workers, physical therapists and other health professionals with expertise in the treatment of bleeding disorders.

Mid-Atlantic Region III Core Center: Regional Statistics

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 (6/1/17-5/31/22) to provide comprehensive care to patients with bleeding and clotting disorders served by Mid-Atlantic Region III Hemophilia Treatment Centers (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.

Evaluation

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 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 Healthy People 2020 and 2030 measures.

340B

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 developed a review process for the use of 340B Program Income for research, based on Health Resources and Services Administration (HRSA) requirements