The Health Science Center’s Department of Pediatrics has had a cooperative agreement with the federal Health Resources and Services Administration for 10 years to maintain the National Newborn Screening and Genetics Resource Center. The new collaboration expands and refines the effort.
Printer Friendly Format

The nation’s first Newborn Screening Clearinghouse (NBSC), connecting millions of parents and health care providers with resources and information relevant to more than 4 million newborns screened annually, will be created through a $3.75 million cooperative agreement from the U.S. Health and Human Services, Health Resources and Services Administration (HRSA), Genetic Services Branch. The project will span five years.

Genetic Alliance, a genetics and health advocacy nonprofit based in Washington, D.C., and the National Newborn Screening and Genetics Resource Center at the University of Texas Health Science Center at San Antonio will develop the NBSC.

Among the many partners in the project are the Genetics and Newborn Screening Regional Collaborative Groups, March of Dimes and the Association of Public Health Laboratories.

Central repository of newborn screening information
For more than 40 years, infants born in the United States have been screened for an increasing number of congenital conditions. Yet parents are often unaware of the number and quality of screenings their children have received, or how options may vary from state to state. The NBSC will increase awareness of newborn screening and improve understanding and informed decision-making capacity of expectant and new parents, health professionals, industry representatives and the public.

The project will connect state and regional public health groups in these efforts and facilitate data and resource sharing. It will provide a central linkage location for access to informational resources and data on quality indicators of newborn screening.

The NBSC will be responsive to emerging technologies and the public health challenges these technologies will present. It also will take advantage of newly established and promising communications technologies that allow just-in-time and point-of-service access for parents and providers alike.

Dr. Bradford Therrell will direct new center
“The National Newborn Screening and Genetics Resource Center is the robust core of the new NBSC,” said Bradford Therrell, Jr., Ph.D., professor of pediatrics at the UT Health Science Center and director of the National Newborn Screening and Genetics Resource Center. “The current national newborn screening data reporting system will be taken to the next level in this project. We look forward to collaborating with Genetic Alliance in the development of this resource.”

Project will provide important information for families and public health
Sharon Terry, president and chief executive officer of Genetic Alliance, called the nation’s newborn screening programs “a phenomenal unsung public health success.”

“Newborn screening offers an unparalleled opportunity to integrate electronic health technologies, data standards, data collection and consumer-focused educational materials all in one coordinated system,” Terry said. “Essentially every child in the nation is screened and enters the health care system in a place where the system is working. The NBSC will allow for appropriate data transparency, integrated tools, technologies and education, and provide the basis for follow-up.”

Natasha Bonhomme, NBSC project director and vice president of strategic development at Genetic Alliance, said newborn screening touches the lives of millions of families and hundreds of thousands of health care providers each year.

Transforming the information-sharing process to benefit families
“The NBSC partners’ goal is to transform information sharing within newborn screening in the interest of each child born in America,” Bonhomme said. “Parents will better understand which newborn screens are required and options for additional screening, while state newborn screening programs will receive needed support in their mission to serve the newborns of our country.”

HSC has maintained NNSGRC for 10 years
For a decade, the Health Science Center’s Department of Pediatrics has had a cooperative agreement with the federal Health Resources and Services Administration to maintain the National Newborn Screening and Genetics Resource Center. The department is currently entering the third year of a five-year, $4.25-million grant funding the project.

This new grant will allow for the expansion of the national database. The NBSC partners plan to improve and expand national newborn screening data collection and education activities simultaneously.

Terry serves on the Office of the National Coordinator’s Health Information Technology (HIT) Standards Committee, so development of the NBSC will model new HIT/exchange guidelines as they are created.

Due to the consumer focus of Genetic Alliance, the project will balance privacy concerns and the informational needs of the public and providers. Dr. Therrell has served on both the American Academy of Pediatrics and American College of Medical Genetics Working Groups, defining current and future national activities in newborn screening.