“The mission of the Midwest Genetics Network 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 states with regional and national initiatives for improving the quality of newborn screening and genetic service delivery.”
The Region 4 Midwest Educational and the Region 4 Resource sections have resources and tools for health professionals and families. An excellent resource for families is the Partnering with your Doctor: The Medical Home Approach. Region 4 Midwest also recently developed the Family Centered Pediatric Emergency Department Sickle Cell Assessment of Needs and Strengths (FC-Peds-ED-SCANS)© to address the complex management of children with sickle cell disease in the emergency department.
Cynthia Cameron, PhD
Susan Berry, MD
Marijata Daniel-Echols, PhD
Michigan Public Health Institute
2364 Woodlake Drive
Okemos, MI 48864