The team at the Newborn Screening Clearinghouse (http://www.nbsclearinghouse.org) is excited to collaborate with the Immune Deficiency Foundation in ensuring that recent and expectant parents, the public, healthcare providers, and other newborn screening (NBS) stakeholders are kept up to date on the implementation of universal SCID newborn screening. The site will be showcasing the IDF SCID Newborn Screening blog and information developed by IDF for SCID screening as part of the Clearinghouse’s efforts to provide quality information about SCID.
The Clearinghouse is the community’s project: visitors to the site are directed to the wealth of information, resources, and tools that have been developed, tested, and adapted over the years by champions of these successful public health programs. The Clearinghouse is a great resource for background information on newborn screening, as well as, information on other disease specific screenings.
Background on the Clearinghouse:
In April 2008, President George W. Bush signed into law the Newborn Screening Saves Lives Act. Among its provisions expanding support for state NBS programs, as well as research and education opportunities, the legislation mandated the establishment of the nation’s first online clearinghouse of NBS information. In September 2009, Genetic Alliance and partners received the cooperative agreement from the Genetics Services Branch of the Maternal and Child Health Bureau, HRSA/HHS to implement this provision of the legislation. This five-year project will increase knowledge and understanding of NBS, connect state and regional public health groups, and facilitate data and resource sharing.
Genetic Alliance launched a beta version of the website in the project’s first year in order to initiate dialogue around the community’s expectations of the Clearinghouse. Shortly following was the launch of the @BabysFirstTest Twitter username for sharing updates on the project and a NBS Playlist on Genetic Alliance’s YouTube channel, which includes general educational videos and lectures in addition to condition-specific videos and family stories. The Clearinghouse project team is now collaborating with a web design and technology firm to develop the next version of the Clearinghouse site, to be named BabysFirstTest.org. This site will be much more interactive, dynamically linking to partner websites like IDF and online content, and will be more reflective of the overall vision for the site. The anticipated BabysFirstTest.org launch date is September 1, 2011.
Genetic Alliance looks forward to your input on the project! For more information on the Newborn Screening Clearinghouse, please contact Natasha Bonhomme, Project Director, at firstname.lastname@example.org
Please COMMENT below to tell us about the activities you are taking to make SCID newborn screening a reality in your own state! Comment or contact IDF through the CONTACT button at the top of the page to talk with someone about what is already happening in your state and how you can get involved. To learn more about the SCID Newborn Screening Campaign, check out the website!http://www.primaryimmune.org/advocacy_center/scid/scid_newborn_screening_initiative.asp