Each year, approximately four million infants are screened in the U.S. for a variety of genetic and other congenital disorders. Identifying infants with congenital disorders early is vital to preventing their death and limiting illness.
State MCH programs play a vital role in managing newborn screening programs by coordinating the system components; ensuring stakeholder involvement; educating health care providers, families and policymakers about the system; and conducting surveillance and monitoring activities to ensure quality.
The National Newborn Screening Contingency Plan
The Newborn Screening Saving Lives Act directs the Centers for Disease Control and Prevention (CDC), in partnership with the Health Resource Service Administration (HRSA) and state agencies, to develop a national Newborn Screening Contingency Plan (or CONPLAN) for a state, region, or consortia of states to use in the event of a public health emergency. The development of the CONPLAN took into account the variability of state newborn screening resources and processes and provides guidance on the formation of state specific plans that need to be emplaced in order to continue critically important newborn screening and clinical management operations in the face of emergencies. In 2015, AMCHP partnered with CDC, HRSA, the Association of Public Health Laboratories, and an advisory committee of expert stakeholders to update the national NBS CONPLAN. The advisory committee’s aims were to:
- Address gaps in laboratory, clinical and long-term follow-up;
- Add language on point-of-care screenings for hearing and critical congenital heart defects; and
- Strengthen emphasis on family engagement.
Version II of the National Newborn Screening CONPLAN is available here.
Additional resources are posted below:
Title V and Newborn Screening: State Performance Measures and Long-Term Follow-Up
This issue brief highlights Title V state performance measures related to newborn screening, and the role of Title V programs in supporting newborn screening programs and long-term follow-up activities for those infants identified with a condition. This issue brief can serve as a resource to Title V programs as they develop and implement strategies to build or improve newborn screening systems, and as they support coordinated systems of care for CYSHCN. This resource also provides examples of how Title V programs can partner with others engaged in efforts to deliver and improve newborn screening and services for children and families. Click here to download the PDF file.
Additional AMCHP Resources
Kate Taft, MPH
Associate Director, Child and Adolescent Health