We are now well into our third year of the NBSC project and are excited about all of the wonderful feedback we have been receiving. Recent project updates include:

• Launch of Baby’s First Test – On September 7, 2011, the newborn screening clearinghouse relaunched as Baby’s First Test, a comprehensive newborn screening web tool. We are excited about the positive responses and helpful feedback received from groups and individuals who have viewed the site,
• Baby’s First Test Blog – The blog is a central component of the site and is key to highlighting important issues in newborn screening. Since the launch, the team blogged about a range of topics including how a new condition was added to the Recommended Uniform Screening Panel, advances in the treatment of Cystic Fibrosis, and the addition of CCHD. We also hosted a guest post from Jana Monaco reflecting on her 10 years in newborn screening.
• Consumer Task Force on Newborn Screening – We received a tremendous response to our call for applications for our 2012 Consumer Task Force on Newborn Screening. This year the task force will have both a training and project component. We are excited about the applicants and look forward to officially announcing the selected group in January 2012.
• 2012 Challenge Awards – In response to our request for proposals, we received 21 applications for the 2012 Challenge Awards. Applicants ranged from hospitals to consumer groups, regional to states entities, and community-based organizations to national advocacy groups. The total amount of funding requested was $378,531, over 3 times the available amount. Genetic Alliance will publicly announce the Awardees in January 2012.

Project Partners

• Genetics and Rare Diseases Information Center
• National Newborn Screening & Genetics Resources Center
• American College of Medical Genetics
• HRSA Regional Genetic and Newborn Screening Service Collaboratives (RCs)
• Association of Public Health Laboratories
• Peristats of the March of Dimes

Additional Resources

• Frequently Asked Questions About the Newborn Screening Clearinghouse
• Newborn Screening Saves Lives Act of 2008 and its technical corrections
• National Advisory Council for the Newborn Screening Clearinghouse
• Introduction to the Newborn Screening Clearinghouse Webinar
• “What’s New with the Newborn Screening Clearinghouse?” Webinar
• Genetic Alliance Consumer Focused Newborn Screening Programs