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:
State Newborn Screening and Birth Defects Program Roles in Screening for Critical Congenital Heart Defects (CCHD)
This issue brief highlights effective practices and policies for states, specifically roles for state newborn screening and birth defects programs, to consider when designing and implementing comprehensive CCHD screening programs. The issue brief builds off of recommendations from a February 2013 meeting, co-hosted by AMCHP and CDC, that brought together state newborn screening and birth defects program representatives to dialogue about key components for successful collaboration in critical congenital heart disease screening and program implementation. Case studies from Indiana, Michigan, New Jersey and Utah are also included. Click here to download the PDF file.
Kate Taft, MPH
Associate Director, Child and Adolescent Health