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HRSA's December Health IT Grantee Spotlight

“MCHB’s Effective Follow Up Initiative Grantees Using Health IT for New Born Screening Coordination

This month HRSA's Health Information Technology (IT) Website highlights the work of HRSA’s Maternal and Child Health Bureau's (MCHB) Effective Follow Up Program grantees. MCHB’s Effective Follow Up program funds four states (Colorado, Indiana, New York, and Utah) to facilitate the use of electronic health information exchange (HIE) for improving care coordination in State newborn screening systems.  These four States successfully implemented a statewide HIE to electronically exchange clinical information in a secure, organized, and efficient manner that greatly benefits patients, providers, and state public health agencies. In addition, these MCHB grantees have established a number of best practices for improving health outcomes. The results of this work includes the establishment of health IT language and terminology standards for transmission of newborn screening results, as well as policies and workflow procedures are now adopted by other state newborn screening programs.

Why is Newborn Screening Important?

Newborn Screening is a valuable public health activity that aims to identify a variety of congenital disorders in newborn children. If not detected and managed early, many of the disorders detected through these screenings could result in high morbidity and mortality rates. All States and Washington, DC have newborn screening programs which integrate genetics into public health. State newborn screening programs support genetic education programs and health IT initiatives to facilitate coordination between families, consumers and providers. Through the integration of newborn and genetic screening programs with other community services, the State supports timely and coordinated care for new parents and their infant.

For more information on New Born Screening, please see MCHB's website.

How Does MCHB’s Grants Help States Use Health IT for NBP Programs?

Each year in the United States, four million infants receive screenings for over 29 genetic conditions. Within this population, up to 19,000 infants test positive with a serious but potentially treatable disorder. This allows timely referral to a provider who can help address the condition immediately. States also link the results of the newborn screening data with other available health information, such as vital records and immunizations. This provides clinicians with a broader understanding of the child and his/her medical needs.  The Effective Follow Up Initiative was established to build off this information and support the effective exchange of this information to improve health outcomes.  The goals of the program include:

  • Effective and timely communication and information sharing among patients/families, clinicians, laboratories, public health agencies, researchers, and relevant community support services.


  • Facilitatation of the  electronic exchange of this information to support effective short-term and long-term follow-up of children with identified conditions including the collection of additional clinical data to evaluate health outcomes.

MCHB’s Effective Follow Up initiative has been successful in helping States share newborn screening data with providers as well as to enhance the coordination of health services in order to improve health outcomes and quality of life of those infants with an identified condition.

Four examples highlighting the success of this program are detailed below.

Examples of States Funded by MCHB

New York State

New York is expanding their program’s capabilities by piloting the electronic  transmission of newborn screening data via HL7 messages with Mt. Sinai Hospital in New York City. They plan to expand the electronic exchange of this data using HL7 messages to ten additional hospitals in the coming year.  

New York State also implemented a web based application called Remote Demographic Entry whereby the hospital staff can electronically enters and transmit NBS data.  Currently, 5 birth hospitals are submitting via this system. 2 hospitals are also actively working to implement a hybrid model of EDT using a combination of an HL7 ADT file transfer and web entry.  

The Effective Follow Up funding was instrumental in helping the New York State Department of Health (DOH) establish their Child Health Information Integration (CHI2) project. This initiative enables the integration of data from various DOH programs serving children in New York.  Currently CHI2 is in the process of integrating  the results from newborn bloodspot screenings, early hearing detection and intervention services, pediatric immunizations, youth lead screenings, results from early interventions, vital statistics, and data from statewide prenatal and neonatal intensive care services.


Indiana is in the process of developing the Indiana Newborn Screening Tracking and Education Program (INSTEP), a web-based application for collecting, managing, and sharing health information. INSTEP provides a State birthing facilities, primary care providers, state-contracted follow-up care providers, and federal, regional, State, or local agencies with access to integrated, population-based, real-time data on newborn screening results. The Indiana Department of Public Health maintains the registry, which includes information on the results of hearing screenings and birth defects.  Data from the registry are then matched to vital records and, through a collaboration with the Regenstrief Institute, the information is available through the Indiana Health Information Exchange.  

According to Bob Bowman, the Indiana State Department of Health’s Director of Genomics and Newborn Screening, INSTEP has  transformed the delivery of care. “INSTEP allows the newborn screening program to receive real-time, integrated information on children, thereby increasing the timeliness and efficiency of program follow-up services.”


Utah is in the process of implementing the Newborn Screening Clinical Health Information Exchange Network. This network will support the integration and exchange of information across the following six public health systems:

1) Early Hearing Detection and Intervention Database
2) Newborn Laboratory Information Management System
3) Intermountain Healthcare (the largest healthcare delivery system in Utah)
4) Utah Dept of Health Immunization registry
5) Utah Health Information Network
6) University of Utah’s web based Medical Home Portal

All six of  these public health programs also connect to an online knowledge resource and disease registry that supports clinicians and families in improving care for children with chronic conditions.


Colorado is collaborating with the Inherited Metabolic Diseases clinic, local and State health personnel, as well as primary care providers to enhance their newborn screening program. The project’s backbone is a comprehensive HIE system hosted by the Colorado Department of Public Health and Environment. Colorado plans to extend the HIE to include the Inherited Metabolic Diseases clinic, local public health agencies, and primary care providers throughout the state. As a result, Colorado will be able to better assess gaps within the State’s newborn screening program.  


MCHB’s investment in supporting the electronic exchange of newborn screening data exemplifies how the partnership between the public health and clinical care delivery systems can lead to higher healthcare outcomes and quality improvement within the healthcare delivery system.  By coupling vital statistics reporting with the results of newborn and genetic tests, these four states have enabled their public health agencies to link patients with timely and appropriate care.

For more information on this MCHB program please contact Debi Sarkar at