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About Baby's First Test

What is Baby's First Test?

Baby's First Test is the nation's newborn screening education resource center. Baby's First Test provides current educational and family support and services information, materials, and resources about newborn screening at the local, state, and national levels. This resource is dedicated to educating parents, family members, health professionals, industry representatives, and other members of the public about the newborn screening system. The 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 anonymous question form called Ask an Expert.

How is Baby's First Test Maintained?

Baby's First Test was formerly supported and funded as a result of the Newborn Screening Saves Lives Act passed in 2008 and the Newborn Screening Saves Lives Reauthorization Act passed in 2014. Through theses acts, Baby's First Test was funded through a cooperative agreement from the Genetic Services Branch of the Maternal and Child Health Bureau of the Health 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.

Currently, Baby's First Test is maintained through grants and other special program funding. Baby's First Test offers technical assistance and advising on newborn screening education materials, strategies, and evaluation, for a negotiated fee. Please contact Natasha Bonhomme at nbonhomme@geneticalliance.org to inquire about technical assitance. 

Baby's First Test staffed by Expecting Health, the maternal and child health initative of Genetic Alliance. Baby's First Test staff updates the site, manages the Resource Center, collects Family Stories, collaborates with states, and keeps families up to date on newborn screening news through our newsletter and social media. 

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. Baby's First Test is in ongoing contact with states to keep updates to state screening panels, contact information, and policies as up to date as possible. Many pages have a resource list at the bottom if you want more information.

How often is the site reviewed?

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.

Learn more about Baby’s First Test.

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Last Reviewed - 3/13/2020

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