National Coordinating Center for the Regional Genetic Service Collaboratives

A grant to a USA public or private non-profit organization to provide support for genetic centers across the country. An informational webinar will be held January 5. Activities will increase provider and consumer knowledge of and access to genetic services and improve the quality of genetic service.

The purpose of this program is to:

1) Develop a framework for a national network of regional genetic centers (National Coordinating Center or NCC) that will serve as a shared resource for providers and patients in each region, assuring that all individuals have access to the same high quality genetic services regardless of where they live;

2) Support and coordinate the work of Regional Genetic Service Collaboratives (RCs) and disseminate national collaborative activities that address the infrastructure needs of public health genetic services in each state; and 3) provide a national genetics education and consumer network. Activities proposed are expected to improve access to and knowledge about genetic services and the quality of those services.

Activities of the NCC include:

1) Facilitating regional genetic resource and service delivery needs assessment; convening and facilitating regional and national dialogues on the genetic services models and standards that will inform the development of Regional Genetic Center Care models.

2) Convening and providing technical assistance to NCC Work Groups and coordinating cross-RC activities. Areas of interest include: components of genetic services in integrated care delivery systems and accountable care organizations (ACOs); coverage of services needed by individuals with genetic conditions; long-term follow-up of individuals identified with genetic conditions; telegenetic strategies; and support for the implementation of the Affordable Care Act by encouraging RC activities that promote the appropriate use of clinical preventive services (genetic services) covered under the law. Wherever feasible, the NCC should facilitate RC activities that incorporate “collective impact” methodologies or other strategies that develop alignment between stakeholders and that lend themselves to quality improvement methodology to effect change.

3) Providing a vehicle for NCC/RC communication with at least one (1) in-person meeting per year of the NCC/RC Project Directors and Managers and HRSA held in the Washington, DC area.

4) Facilitating partnerships with Federal and non-Federal entities including, among others, HRSA-funded programs such as the Sickle Cell Treatment Demonstration Regional Collaboratives, the Sickle Cell Newborn Screening Program, the Regional Hemophilia Program, the Newborn Screening Data Repository and Technical Assistance Center, the National Newborn Screening Clearinghouse, the Reproductive and Environmental Health Network and Federally Qualified Health Centers (FQHCs); the Association of University Centers on Disabilities, Leadership, Education in Neurodevelopmental and Related Disabilities Program (AUCD LEND); the Catalyst Center, Improving Financing of Care for Youth and Children with Special Health Care Needs; the Association of Maternal and Child Health (AMCHP); the Association of State and Territorial Health Officials (ASTHO); and the Newborn Screening Translational Research Network (NBSTRN).

5) Developing tools and resources that link patients to information and services. The information and resources should be available using innovative and multi-modal access and dissemination strategies.