Newborn Screening
Quarterly Newsletter
Brought to you by Genetic Alliance
September 12, 2012 Issue #7
It is hard to believe that we are already celebrating our first birthday! We want to thank all of our partners who have made the past year such a success as we spread awareness and information about newborn screening. September is also newborn screening awareness month and we are working hard with our Consumer Task Force to share information about screening. Below you will find a video of some of the members of our Task Force sharing their experiences. You will also find a poster highlighting the ABCs of screening. If you are interested in getting copies of the poster, please email [log in to unmask].
Follow us on Facebook and Twitter to see the other exciting plans we have in store for this month!
http://www.babysfirsttest.org/newborn-screening/screening-facts#abc
Many people and organizations laud newborn screening as one of the great public health achievements of the century. The Association of Public Health Laboratories (APHL) and the Centers for Disease Control and Prevention are teaming up to celebrate an important milestone: the upcoming 50th anniversary of newborn screening. Celebratory events will include the release of a book looking at success stories and an exhibit that will visit several professional conferences. Other events are also in the works, and we look forward to working with APHL as they develop. Congratulations to all the nurses, follow-up teams, state laboratories, advocates, and parents on making newborn screening such a success!
The past year has been full of exciting developments for those involved with critical congenital heart disease (CCHD). After being added to the Recommended Uniform Screening Panel in September 2011, a CCHD demonstration project was announced by HRSA and awarded to six centers across the United States. Congratulations to New Jersey, the New England Collaborative, Utah, Michigan, Virginia, and Wisconsin, who have already begun their work. All of the awardees recently met at Children’s National Medical Center to discuss current challenges and the future of CCHD screening. We applaud the hard work that is so evident in everything these dedicated professionals are doing.
There are currently four states that screen every baby for CCHD: Indiana, New Jersey, Maryland, and New Hampshire. Across the country, 20% of states have either started screening or passed legislation to begin soon. Another 32% have introduced legislation regarding the implementation of screening newborns for CCHD, and 24% of states have multi-center screening or demonstration projects.
Our 2012 Challenge Awards have produced some wonderful educational videos for both parents and providers. Baby’s First Test remains committed to ensuring that quality educational opportunities about newborn screening are available free of cost online. The following videos can be found on the Baby’s First Test website. Please feel free to share these with your networks.
CCHD for Parents - An educational video created by Children’s National Medical Center that introduces parents to the importance of pulse-oximetry as a screening tool for critical congenital heart defects.
http://www.youtube.com/watch?v=SMZ0GlG94pc&feature=youtu.be
CCHD for Providers - A video created by Children’s National Medical Center that instructs providers on how to perform pulse-oximetry on newborns and highlights common mistakes. This video also covers resources available for providers to give to new parents.
http://www.youtube.com/watch?v=Cjz4WGYP4Xk&feature=relmfu
Blood Spot Collection - A video made by the Iowa State Hygienic Laboratory and School of Journalism to detail the CLIA-approved guidelines for collection of the newborn blood spot. This video is the result of a nursing survey to evaluate common misconceptions and questions.
http://www.youtube.com/watch?v=hlC8cCVIuIs&feature=plcp
I'm Just a Day Old! - And finally, a word from the baby. A cute video about a baby’s thoughts on newborn screening, also created by the Iowa State Hygienic Laboratory and School of Journalism.
On Thursday, September 13th and Friday, September 14th, the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children (SACHDNC) will host its 28th meeting in Washington, DC. To access the detailed agenda, please visit the meeting event page.
Genetic Alliance’s newborn screening team will be at the Advisory Committee meeting, sharing updates and action items via Twitter and Facebook. Follow @BabysFirstTest to join the conversation. We hope to see you there!
- RFA to Study NBS Whole Genome Sequencing Announced
- $3M Grant to Study Newborn Screening for Lysosomal Storage Disorders Announced
- Maryland Begins Screening Newborns for CCHD
- Supreme Court Upholds Affordable Care Act
- Archived Blood Spots Could Be Epigenetic Jackpot
- APHL Awarded Large NBS Grant
Visit Newborn Screening in the News to keep up-to-date on the latest issues affecting newborn screening.
Recent Events:
- Southeast Regional NBS & Genetics Collaborative Meeting
- BlogHer Blogger Baby Shower Informational session
- Baby Shower Informational Session for Women in DC
- Region 4 Genetics Collaborative Meeting
Upcoming Events:
- Western States Regional Genetics Collaborative Meeting October 2-4, 2012
- American Academy of Pediatrics Annual Meeting: October 20-23, 2012
- National Society of Genetic Counselors Annual Education Conference: October 24-27, 2012
City MatCH (Urban Maternal and Child Health Conference): December 12-14, 2012
The Newborn Screening Newsletter provides updates on the advancement of Genetic Alliance newborn screening (NBS) initiatives, as well as new opportunities to engage in newborn screening dialogues on a community, state, and national level. If you have comments or suggestions for content you would like to see included in the newsletter, please email Natasha Bonhomme at [log in to unmask].
We welcome your comments and questions! Some of the Genetic Alliance staff members working on NBS projects include:
Sharon Terry – Principal Investigator
Natasha Bonhomme – Project Director, [log in to unmask]
Elizabeth Stark – Project Manager, [log in to unmask]
Mark Petruniak – New Media Coordinator
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