About Us Press Room
X-ALD and MPS-1 Added to National Recommended Uniform Screening Panel
WASHINGTON, DC – February 17, 2016 – Last year, the Advisory Committee for Heritable Disorders in Newborns and Children (ACHDNC) voted to recommend both X-Linked Adrenoleukodystrophy (X-ALD) and Mucopolysaccharidosis type I (MPS I) be added to the Recommended Uniform Newborn Screening Panel (RUSP). Yesterday, in a letter to Committee Chairperson Dr. Joseph Bocchini, the Secretary of Health and Human Services, Sylvia Burwell, announced her decision to accept these recommendations and add both X-ALD and MPS 1 to the RUSP. Although these conditions were added to the RUSP, the Secretary chose not to recommend any additional federal funding at this time to assist states in adding these conditions to their current programs.
Baby's First Test Upgrades English and Spanish Newborn Screening Web Tools
As the nation’s newborn screening educational resource center, Baby’s First Test provides parents, healthcare professionals, and the public access to reliable, up-to-date information and resources on the newborn screening process. Both sites offer training videos and other educational resources for healthcare providers supporting families throughout the newborn screening process as well as information at the local, state, and national levels for new and expectant parents.
Baby's First Test Funds Four Innovative Projects
WASHINGTON, DC – May 7, 2014 – Baby’s First Test, the nation’s educational resource center for newborn screening, is pleased to announce the 2014 Challenge Award recipients. The Challenge Award program provides funding for selected proposals that detail a project focusing on increasing newborn screening education and/or implementing novel solutions to challenges within the newborn screening system.
New Videos in Five Languages Teach Parents about Newborn Screening for Heart Defects
WASHINGTON, DC - July 15, 2013 - Children's National Medical Center, through support from Baby's First Test, has created videos in five languages to help new and expectant parents learn the importance of screening newborns for potentially critical heart disease. The Heart Smart series is available online - now in Arabic, Chinese, French, Russian, and Spanish, as well as English - a Children's National and Baby's First Test.
Federal Advisory Committee Recommends Pompe Disease for Newborn Screening
WASHINGTON, DC – May 17, 2013 – In a long awaited meeting, the Secretary's Discretionary Advisory Committee for Heritable Disorders in Newborns and Children (DACHDNC), in a vote of 11-2, recommended the addition of Pompe Disease to the recommended uniform newborn screening panel (RUSP). The letter to the Secretary will highlight the need for states currently implementing Pompe screening to coordinate activities and help establish a framework for state-based screening. The committee considered both the significant benefit to screening for infantile as well as the need for more studies about the optimal management of those with late onset.
Baby's First Test Continues to Fuel Innovative Programs
WASHINGTON, DC – March 05, 2013 – Baby’s First Test, a Genetic Alliance project, is pleased to announce partnerships with five institutions that will carry out innovative projects increasing awareness of newborn screening or implementing novel solutions to challenges in the newborn screening system. Each project will receive funding of up to $20,000. This is the third year that Baby’s First Testtm has supported innovative projects at the local, state, and national level.
Baby's First Test Celebrates First Birthday
WASHINGTON, DC – September 13, 2012 – the nation's educational resource center for newborn screening celebrates its first birthday during Newborn Screening Awareness Month this September.
Genetic Alliance Applauds Supreme Court Decision on Affordable Care Act
WASHINGTON, DC – June 28, 2012 – Today, the Supreme Court upheld the Patient Protection and Affordable Care Act, which contains several provisions pertaining to newborn screening.
Children's National Medical Center and Baby's First Test Join Forces to Advance Screening for Critical Congenital Heart Disease in Newborns
WASHINGTON, DC -- Today, Children's National Medical Center and Baby's First Test released two videos on screening for critical congenital heart disease (CCHD) using pulse oximetry (pulse ox) in newborns. The videos, produced for parents and clinicians respectively, were designed to forward knowledge about the test.
Announcing the Baby's First Test Blogging Ambassadors
WASHINGTON, DC – May 01, 2012 – Mom bloggers will write about their personal newborn screening experience and the resources available on the newborn screening Clearinghouse, Baby’s First Test. These blogs will be posted both on their individual sites and the Baby's First Test website as well. Read the first of this series of blogs here.
Baby's First Test Featured in Lab Matters, Association of Public Health Laboratories Quarterly Magazine.
Download the pdf of Getting the Word Out: New Website Educates About Newborn Screening.
Secretary of Health and Human Services Adopts New Recommendation on Newborn Screening
WASHINGTON, DC – September 22, 2011 – Secretary of Health and Human Services, Kathleen Sebelius, adopted the recommendation of the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children (SACHDNC) that Critical Congenital Heart Disease (CCHD) be included on the Recommended Uniform Screening Panel (RUSP). RUSP is the national recommendation that informs states of the congenital conditions that should be included in each state newborn screening program. SACHDNC put this recommendation forward last year, after following the robust evidence review process they have pioneered. After receiving additional review from the Interagency Coordinating Committee on Screening in Newborns and Children, Secretary Sebelius determined that intervention for this condition during the newborn period is critical to saving lives.
Genetic Alliance Launches Public Newborn Screening Resource
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, is designed to increase awareness of newborn screening and to serve as an information hub for parents, health care providers, and other stakeholders.
See the full article at GenomeWeb (free registration required)
In the August 2011 issue of Exceptional Parent magazine, Genetic Alliance's monthly column discusses efforts to improve the visibility of newborn screening issues, including Baby's First Test.
New Resource BabysFirstTest.org Informs Parents and Public about Newborn Screening (Press Release, PDF), September 21, 2011
For more information, please contact Natasha Bonhomme at firstname.lastname@example.org.
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