The Project Grant award from the Health Resources and Services Administration (HRSA) under the Maternal and Child Health Federal Consolidated Programs (CFDA 93.110) will provide $2,025,600 to Emory University to establish the Integrative Newborn Screening-Long-Term Follow-Up (INBS-LTFU) Consortium. The consortium aims to improve the efficiency and integration of newborn screening systems across four states (Georgia, Florida, Mississippi, Louisiana) by:
Developing data management solutions to enhance coordination of newborn screening services;
Facilitating information exchange and collaborative learning opportunities for agencies, healthcare providers, and families;
Improving short-term and long-term follow-up care for children identified through newborn screening, including access to treatments, medical foods, and nutrition/disease education; and
Providing workforce training and technical assistance to support the newborn screening system.
This 4-year project seeks to adopt a national framework to enhance the timeliness and continuity of newborn screening and follow-up services, ultimately improving outcomes for children with heritable disorders.