In 2017, the Maternal and Child Health Bureau of the Health Resources and Services Administration (MCHB/HRSA), Genetic Services Branch (GSB) awarded grants to establish the seven Regional Genetics Networks (RGNs), a National Coordinating Center (NCC), and the National Genetics Education and Family Support Center (NGEFSC) as part of on-going efforts to improve the health of medically underserved by promoting the translation of genetic medicine into public health and health care services. The NCC is formed as a partnership with the GSB/MCHB/HRSA through a cooperative agreement with the American College of Medical Genetics and Genomics (ACMG). The NCC is organized around a central office and an Advisory Committee. The Advisory Committee includes the seven RGNs and representatives of national organizations that serve as resources to the NCC and the RGNs.
Goals of the National Coordinating Center of the Regional Genetics Networks
A fundamental goal of the NCC and RGNs is to bring genetic services closer to local communities. The NCC supports activities of the seven RGNs by providing infrastructure, coordination, technical assistance and resources necessary to address issues of universal importance, thereby avoiding duplication of efforts and allowing the regions to focus on their unique areas of need.
The National Coordinating Center (NCC) for the Regional Genetics Services Collaboratives (RCs) is currently focusing on the following activities:
- Establishing a national infrastructure that will provide national genetics expertise and technical assistance to the RGNs. This technical assistance will include the following topics: quality improvement; telegenetics; data collection; clinical decision support tools; healthcare access and financing; and other topics identified by the NCC/RGNs and HRSA;
- Developing, leading, and supporting quality improvement activities with the RGNs to achieve the goals of the RGNs. This support will include training in QI and serving as the centralized data repository for QI activities;
- Reviewing, analyzing, and making recommendations on the health care delivery system and financing as they relate to genetic services;
- Providing technical assistance support/services to regions and genetic service providers on health care financing, changes in health care delivery systems, and advances in genetics practice and technology; and
- Working with RGNs and the National Genetics Education and Family Support Center (NGEFSC) to recruit new family leaders for workgroups and advisory groups.