NEW YORK (GenomeWeb News) – The Genetic Alliance and the University of Texas Health Science Center, along with other collaborators, will use a $3.8 million government grant to start a newborn screening information and communications program that will serve as a resource for parents, Genetic Alliance said.
The Newborn Screening Clearinghouse (NBSC) program, funded under a cooperative agreement from the US Health and Human Services and the Health Resources and Services Administration’s Genetic Services Branch, will maintain educational and family support services, as well as resources and data on newborn screening.
The aim is to increase awareness, knowledge, and understanding of newborn screening among parents, health professionals, industry representatives, and the general public. It also will maintain current data on quality indicators of newborn screening performance.
Sharon Terry, president and CEO of Genetic Alliance, said in a statement that 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 that the NBSC will "allow for appropriate data transparency, integrated tools, technologies and education, and provide the basis for follow-up."
Under the five-year project, Genetic Alliance will develop the NBSC along with University of Texas Health Science Center’s National Newborn Screening and Genetics Resource Center, the Genetics and Newborn Screening Regional Collaborative Groups, March of Dimes, and the Association of Public Health Libraries.
"The NBSC partners’ goal is to transform information sharing within newborn screening in the interest of each child born in America. 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," explained Natasha Bonhomme, project director for NBSC and vice president of strategic development at Genetic Alliance.