Wisconsin Research Team Awarded Grant to Investigate Test That Detects Critical Congenital Heart Disease in Newborns

A Wisconsin research team, including investigators at the Medical College of Wisconsin (MCW) and Children’s Hospital of Wisconsin Research Institute, received a federal grant to review the use of pulse oximetry (POX) screening in babies born in Wisconsin hospitals, birthing centers and home deliveries. Starting in January 2013, the Wisconsin Screening Hearts in Newborns (SHINE) project team will begin collecting information to understand the impact of POX screening to detect critical congenital heart disease (CCHD) in newborns in the state.

According to the Centers for Disease Control and Prevention, more than 7,000 babies are born each year in the U.S. with a critical congenital heart disease and often require surgical intervention the first month or year of birth. Most CCHDs are caught by prenatal ultrasound and neonatal physical examinations; however, many newborns with CCHD can appear healthy and do not become critically ill until after they go home from the hospital. Pulse oximetry screening is a non-invasive test that measures the amount of oxygen in the blood through a small sensor on a finger or a toe. It is an inexpensive and effective way to screen for many types of CCHD that may go undetected.

The U.S. Department of Health and Human Services Health Resources and Services Administration (HRSA) awarded three-year, $900,000 federal grants to six teams nationwide, including Wisconsin. The grants are to implement recommendations by the U.S. Secretary of Health and Human Services that POX screening be added to the recommended uniform screening panel for heritable disorders, and the potential public health impact of universal POX screening be evaluated. The Wisconsin SHINE project team includes the UW School of Medicine and Public Health, MCW, the Wisconsin Department of Health Services and the Wisconsin State Laboratory of Hygiene.

Previous studies by SHINE researchers have shown that the diagnosis of CCHD is missed in approximately 1 in 25,000 births and results in death before diagnosis in 1 in 40,000 births in Wisconsin. The goals of the project are to support health care providers and medical institutions as they increase the number of newborns given the POX screen, to create an electronic health information exchange to track POX screening results and the diagnosis of CCHDs, and to assess the cost of POX screening in Wisconsin.

“We want to teach outlying hospitals how to accurately perform this screening, to set up a network of institutions where babies diagnosed with a CCHD can be sent for further evaluation, and to study the impact of all of this on Wisconsin families,” said Stuart Berger, M.D., professor of pediatrics at MCW and a principal investigator for the grant. “We’re honored to be partnering with our colleagues at the University of Wisconsin, the (Wisconsin) Department of Health Services, and the (Wisconsin) State Laboratory of Hygiene on this project. We’re also proud to be among the few states that have been awarded a grant to study this life-saving test.”

Dr. Berger is medical director of the Herma Heart Center at Children’s Hospital of Wisconsin and a researcher at the Children’s Hospital of Wisconsin Research Institute. John Hokanson, M.D., associate professor of pediatrics at the UW School of Medicine and Public Health (SMPH), and chair of the Wisconsin ad hoc congenital heart disease task force, is principal investigator for the UW SMPH, which applied for and was awarded the grant from the HRSA. Julie Panepinto, M.D., M.S.P.H., professor of pediatrics at MCW, director of the Center for Clinical Effectiveness, hematologist at Children’s Hospital of Wisconsin, and a researcher at the Research Institute, is a co-investigator.