Baby's First Test: A Newborn Screening Clearinghouse to Connect Stakeholders to Resources

Purpose for the program: Newborn screening (NBS) in the United States reaches over four million babies every year, and identifies thousands of newborns with genetic, metabolic, or functional disorders. Early diagnosis allows timely intervention for these newborns, leading to a significant reduction in morbidity, mortality, and associated disabilities. As newborns are screened for an increasing number of conditions, there is a growing need for centralized, easily accessible, and accurate information. Genetic Alliance and partners received a cooperative agreement from the Health Resources and Services Administration to develop the nation’s first clearinghouse of NBS information, as mandated in the Newborn Screening Saves Lives Act of 2008.

Proposed change: The Newborn Screening Clearinghouse will increase awareness and understanding of NBS for expectant and new parents, health professionals, industry representatives, and the public.

Implementation, outcomes and evaluation: As a one-stop-shop for NBS information, the Clearinghouse website (www.nbsclearinghouse.org) directs users to a wide variety of existing resources, including Peristats by March of Dimes, and condition-specific information provided by the National Center for Biotechnology Information. Links to state-specific NBS program information are available through the Genetic Alliance Resource Repository housed on the Clearinghouse website. The Clearinghouse is responsive to emerging technologies and corresponding public health challenges through social media features. The interactive blog provides an open space for parents, families, providers, and other users to learn from one another and explore opportunities in education and policy. The Clearinghouse engages the public through Twitter (@BabysFirstTest), an RSS feed of current NBS news updates, and a YouTube NBS playlist. As the project enters its second year, we are building user channels to prioritize resources for specific user groups, such as parents, providers, and the media. We continue to evaluate the needs of Clearinghouse users and the functionality of the site. Metrics from Google Analytics and Twitter will be used to evaluate the effectiveness and reach of the Clearinghouse, in addition to feedback from national experts serving on the Materials Working Group and Public Education Working Group.

Implications for nursing practice: Before and after the birth of a child, women's health and maternal-child nurses have a fundamental role in educating families about NBS. The Clearinghouse provides information about screened conditions at the point of care, in addition to the most current information on NBS tests, tools, technologies, and best practices and protocols.

Keywords: newborn screening, clearinghouse, social media, newborn screening clearinghouse