Millions of infants are born in the United States each year, and early detection of genetic, endocrine, metabolic, hearing, and critical congenital heart conditions ensures that they can receive timely treatment for these critical conditions. Newborn screening programs provide this vital public health function, yet, in many jurisdictions across the country, newborn screening data can be fragmented and siloed. Barriers such as gaps in technical expertise and workforce capacity can also prevent newborn screening results from being exchanged in a manner that supports timely and high-quality data moving between providers, state programs, and labs, which, in turn, impacts the timeline for treatment and assistance provided to infants and families.
Altarum and its partners are helping states address these issues, through creation of the Innovations in Newborn Screening Interoperability (INBSI) project. As part of this project, Altarum created and maintains an online Resource Center for state newborn screening programs that includes monthly live webinars, on-demand training resources, and Project ECHO, a virtual learning collaborative that connects participants to subject matter experts and peers. Through INBSI, Altarum also provides technical assistance to states to advance their newborn screening interoperability, from assessing state readiness to providing direct technical assistance and creating customized roadmaps for enhancing interoperability. Altarum is also active in national policy and standards discussions, working to ensure that high quality standards are available to newborn screening programs and that policies and regulations reflect the important role these programs play in public health.
Since its launch in 2020, the INBSI program has impacted state newborn screening programs in the following ways:
- To date, 48 states have benefited from training and education made available through Altarum’s INBSI project.
- 13 states have enrolled in the INBSI technical assistance program, with seven completing Readiness Assessments and five completing their individual state Interoperability Roadmaps
- Seven states participated in the first cohort of the ECHO educational offering and 18 states are currently participating in the second cohort
- 47 trainings were developed and are available on the online Resource Center
Faculty, Advisory Board members, and staff for INBSI include some of the world’s experts in HL7 messaging, Dried Blood Spot Screening, Early Hearing Detection and Intervention, Critical Congenital Heart Disease, metabolic conditions, hospital and health department leadership, and health information technology. Through the INBSI program, we have learned that newborn screening programs thrive when collaborating with other states and that interoperability helps identify gaps in follow up care for newborns and can be a tool for addressing health equity. By enhancing connectivity between state public health newborn screening programs and health care providers, Altarum’s work on the INBSI project aims to reduce morbidity and mortality associated with heritable disorders in newborns and children.
States across the U.S. are benefitting from Altarum’s technical assistance and educational offerings in support of their newborn screening programs.
The INBSI program is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS). The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by HRSA, HHS, or the U.S. Government. For more information, please visit HRSA.gov.