About Us About Baby's First Test
What is the Newborn Screening Clearinghouse?
Baby's First Test houses the nation's newborn screening clearinghouse. The clearinghouse provides current educational and family support and services information, materials, and resources about newborn screening at the local, state, and national levels and serves as the Clearinghouse for newborn screening information. The clearinghouse is supported and funded as a result of the Newborn Screening Saves Lives Act passed in 2008. Continued support for the clearinghouse is possible under the Newborn Screening Saves Lives Reauthorization Act passed in 2014. This resource is dedicated to educating parents, family members, health professionals, industry representatives, and other members of the public about the newborn screening system. This site also provides many ways for people to connect and share their viewpoints and questions about the newborn screening system.
By establishing a collection of educational information in a single place, BabysFirstTest.org is a one-stop shop that:
- Increases awareness, knowledge, and understanding of newborn screening for expectant and new parents, health professionals, industry representatives, and the public;
- Connects state and regional public health groups;
- Facilitates data and resource sharing; and
- Responds to emerging technologies and corresponding public health challenges.
On BabysFirstTest.org you can find:
- Basic facts about newborn screening and what to expect from the newborn screening process;
- State-specific newborn screening program information for parents and health professionals, including conditions on state panels, state program contacts, and support resources;
- Condition-specific information, including causes, treatment, and family experiences;
- Social media features, such as micro-blogging through Twitter and videos; and
- An interactive blog that provides an open space for users to learn from one another and explore opportunities in education and policy.
How is Baby's First Test Run?
Baby's First Test is funded through a cooperative agreement from the Genetic Services Branch of the Maternal and Child Health Bureauof theHealth Resources and Services Administration to Genetic Alliance, a non-profit organization founded in 1986 that seeks to improve health through the authentic engagement of communities and individuals. This project is staffed by Genetic Alliance and manages working groups and advisory committees that are representative of the newborn screening and maternal and child health community, and Genetic Alliance contracted with Blenderbox to develop the site. In 2014, HRSA rewarded Genetic Alliance with an additional 4 years of funding toward the cooperative agreement established to support Baby's First Test.
Where do you get your information?
The information on this site is from a range of credible and trusted sources including health agencies, advocacy organizations, public health programs and more. Many pages have a resource list at the bottom if you want more information.
The site is reviewed and updated on an ongoing basis. Minor edits and updates take place daily while a more extensive, evaluative review of the site happens every other month. If you would like to bring something to our attention please fill out this form. We are always looking for feedback and new information.
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