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). The RCs implement activities to improve the ability and capacity of States across the country and US Territories to provide genetics and expanded newborn and child screening services for heritable disorders, and to improve education, outreach, coordinated follow-up care, and laboratory quality and surveillance for newborn screening. The purpose of this funding was to develop regional solutions to address the maldistribution of genetics services and expertise, improve and expand newborn screening, and enhance the delivery of quality genetic services across the United States. The activities of the RCs aim to improve the health outcomes of individuals affected with heritable disorders over the life span and their families; especially populations medically underserved and in rural areas.
The Region 4 Midwest Genetics Collaborative is one of the seven regional collaborative groups formed and is made up of seven states: Illinois, Indiana, Kentucky, Michigan, Minnesota, Ohio and Wisconsin. The project is administered by Michigan Public Health Institute in Okemos, Michigan. Since the initiation of Region 4 in 2004, a great deal of progress has been made to promote sharing among states and the maximization of available newborn screening and genetic resources.
Region 4 Midwest uses a regional approach to improve access to services, quality care, and genetics expertise in a medical home environment that is culturally sensitive. There are over 120 members from the seven states representing state public health agencies, geneticist and other sub specialists, primary care providers, newborn screening and genetic testing laboratories and families of children with genetic conditions.
All newborns will receive state-of-the-art newborn screening and follow-up; children and youth with heritable disorders will have access to genetic expertise and coordinated care in the context of a medical home.
The mission of the Region 4 Midwest Genetics Collaborative is to:
- Increase access to information about newborn screening and genetic resources, services and family support systems.
- Facilitate data collection and analysis to guide decision-making regarding screening cut-offs, diagnosis and long term treatment of heritable disorders.
- Support state public health agencies in improving infrastructure for genetic service delivery to children with heritable disorders.
- Provide a forum for families, public health, and clinical providers to share best practices and models for improving newborn screening, follow-up and genetic care coordination.
- Link Region 4 Midwest states with regional and national initiatives for improving the quality of newborn screening and genetic service delivery.