Submission #14645

New England CCHD Newborn Screening Project
Monica McClain
Research Associate Professor
Institute on Disability, UNH
Newborn Screening
Infant (< one year)
Five state public health programs (newborn screening, Title V, birth defects) in Maine, New Hampshire, Vermont, Rhode Island, and Connecticut -Nine birthing facilities: Catholic Medical Center, Concord Hospital, Dartmouth-Hitchcock Hospital, Elliot Hospital, Hartford Hospital, Maine Medical Center and affiliated sites, Wentworth-Douglas Hospital, Women & Infants Hospital, Yale-New Haven Hospital
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 practice
Hospital setting
Planned project outcomes include a project report and other publications.