NEW YORK (GenomeWeb News) – Genetic Alliance has launched an online resource that will provide a range of information on newborn screening tests that it developed with several partnering organizations at the behest of the US Department of Health and Human Services.
The web resource, Baby's First Test, was designed to increase awareness of newborn screening and to serve as an information hub for parents, healthcare providers, and other stakeholders.
The project was funded in 2009 through a $3.75 million cooperative agreement from HHS' Health Resources and Services Administration's Genetic Services Branch, which sought to create such a resource as a component of the Newborn Screening Saves Lives Act of 2008.
Genetic Alliance CEO and President Sharon Terry said in a statement that the resource "aims to support families by promoting earlier education about newborn screening. It will also provide a resource for healthcare providers to educate parents about what to expect after their baby is born."
The site should serve as a comprehensive guide for newborn screening information, including conditions covered and how to respond to a positive test result.
To develop the resource Genetic Alliance partnered with the National Newborn Screening and Genetics Resource Center at the University of Texas Health Science Center at San Antonio, the Genetics and Newborn Screening Regional Collaborative Groups, March of Dimes, and the Association of Public Health Providers, among others.
The website provides the basic facts about newborn screening, information on genetics and family history and how they relate to conditions, screening resources with links to government and non-profit agencies involved in newborn screening, and a list of the conditions that are screened for in every state, and a review of how states choose their screening panels.