New England CCHD Newborn Screening Project

Validating Screening Protocols and Enhancing Public Health Infrastructure

Project Description

There are several challenges associated with the implementation of Critical Congenital Heart Disease (CCHD) Newborn Screening (NBS). These challenges include: inability of public health agencies to collect real-time screening data, as CCHD NBS is conducted in hospitals and birthing centers; financial and staffing limitations of public health agencies and birthing facilities to develop and maintain new programs; lack of quality assurance/improvement processes; and education of healthcare providers and families about CCHD NBS. In addition, in New England, the geographic distribution of parents and newborns, birthing facilities, and pediatric specialists routinely results in services being delivered in multiple states.

The goal of the New England CCHD Newborn Screening Project is to develop processes for CCHD screening that will set the stage for improved health outcomes for newborns with CCHD, and their families. This collaborative project aims to enhance and expand existing networks among state public health departments and birthing facilities, and to share resources and expertise in developing CCHD newborn screening protocols, educational materials and programs, and program evaluation among five New England states: Maine, New Hampshire, Vermont, Rhode Island, and Connecticut. Further, these resources will be utilized to assure access to critical diagnostic and treatment services, regardless of distance from major metropolitan centers in this geographically diverse region with many remote areas.

The project objectives include:

1. Create a network of state public health departments and birthing facilities
2. Develop a plan to incorporate CCHD screening and reporting
3. Develop guidelines to collect and report screening results
4. Develop and deliver educational programs for providers and families
5. Perform quality assurance, outcomes analyses (including costs), and public health monitoring
6. Establish guidelines for screening follow-up and reporting
7. Establish state level health information exchange systems
8. Prepare a project evaluation that includes next steps and identified best practices

Planned project outcomes include a project report and other publications.

The New England CCHD Newborn Screening Project is funded by a three year, $900,000 grant from the U.S. Department of Health and Human Services, Health Resources and Services Administration.