In 2004, the Maternal and Child Health Bureau of the Health Resources and Services Administration (MCHB/HRSA), Genetic Services Branch (GSB) awarded grants to establish seven Genetics and Newborn Screening Regional Collaborative Groups (RCs) and a National Coordinating Center (NCC) as part of on-going efforts to improve the health of children and their families 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 RCs and representatives of national organizations that serve as resources to the NCC and the RCs.
Goals of the National Coordinating Center and the Regional Collaboratives
A fundamental goal of the NCC and RCs is to bring genetic services closer to local communities. The NCC supports activities of the seven RCs 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 NCC also facilitates local projects, and uses communities identified through the RCs to pilot test materials for policymakers, health professionals and families.
The National Coordinating Center (NCC) for the Regional Genetics Services Collaboratives (RCs) is currently focusing on the following activities:
- Working with the RCs to facilitate their communication, partnerships, and collaborations on a local level and meeting on a monthly basis remotely and once per year in-person;
- Working with the RCs to ensure access to quality care and appropriate genetic expertise in the context of a medical home;
- Continuing the development of a program to evaluate outcomes of projects undertaken by the RCs and the NCC;
- Developing electronic medical record (EMR) specifications for Clinical Genetic Patient Care;
- Collaborating with other programs that intersect with this project;
- Supporting further development of existing collaborative work on data sets for follow-up of newborn screening;
- Developing a National Genetics Education and Consumer Network (NGECN) in partnership with the Genetic Alliance which assists consumers, engages consumer groups; bridges between consumers and services provided by HRSA-funded programs and centers, links State programs with a broad range of constituencies to promote genetics education, disseminates existing resources and services information, and has an advisory body of stakeholders; and (8) developing a quality assessment educational program based on the learning collaborative model that includes ongoing analysis of outcomes.
The NCC is also developing a multi-pronged project for continuing and expanding the national evaluation of the RCs and the NCC (including NGECN). Evaluation activities will be under the overall direction of an evaluator working with an Improvement Adviser, the four Learning Collaboratives, and the Evaluation Workgroup.