Baby's First Test



Baby's First Test is the United States' first clearinghouse for newborn screening information managed by Genetic Alliance. This online resource is tasked with providing information to expectant and new parents, health professionals, industry representatives, and the public. Newborn screening policies remain at the discretion of each state. As part of a cooperative agreement from the Health Resources and Services Administration, Genetic Alliance launched this online resource on September 7, 2011.

History
The statutory authority to establish Baby's First Test came from Section 5 of the Newborn Screening Saves Lives Act of 2007. More specifically, funding is authorized through section 1112 of the Public Health Service Act. The legislation notes that the clearinghouse must contain resources such as information on family support and services, educational materials, and research and data on newborn screening. Since the type and number of screenings varies state by state, both health professionals and parents alike are often unaware of these variations and discrepancies. Although the Secretary Advisory Committee on Heritable Disorders for Newborns and Children provide a guideline to recommend disorders that all states should screen for, the Recommended Uniform Screening Panel is not mandate. Actual funding for this clearinghouse was awarded in 2009 to Genetic Alliance. The HRSA Maternal Child Health Bureau manages this cooperative agreement.

Site Organization
Baby’s First Test contains sections geared towards parents, health professionals, and the public. The site includes state-specific information, which can be accessed through the hyper-linked map. Each state’s page lists the conditions screened, a general overview of newborn screening in that state, and policies and resources including the state’s dried blood spot retention policy. Baby’s First Test serve as the platform for the Newborn Screening Challenge Awards, which is given out to applicants who come up with innovative ways to expand newborn screening information and integrate the clearinghouse resources with new or existing educational, engagement, or outreach efforts. Baby’s First Test is also one of the primary tools for members on the Consumer Task Force on Newborn Screening. Members of this task-force are trained on issues pertaining to newborn screening.