From: Natasha Bonhomme [mailto:[log in to unmask]] Sent: Wednesday, May 16, 2012 2:30 PM Subject: Newborn Screening Quearterly Newsletter Issue #6 [http://www.geneticalliance.org/sites/default/files/ksc_assets/images/ga_logo.png]<http://listserv.galists.org/t/663578/228877/2034/0/> Newborn Screening Quarterly Newsletter Brought to you by Genetic Alliance May 16, 2012 Issue #6 IN THIS ISSUE Baby’s First Test Challenge Awards Consumer Task Force SACHDNC Meeting NBS in the News Posters and Presentations Contact View web version<http://listserv.galists.org/t/663578/228877/2033/0/> Baby’s First Test Baby’s First Test has had a great first eight months and is already looking towards our one-year anniversary. Below you will find some of the updates we have made in the past few months. * Glossary – Based on feedback from Family Voices leaders from the Western States Regional Collaborative, we recently implemented a glossary to help decode the many complicated terms and acronyms used in the newborn screening community. This glossary allows users to see a quick definition when hovering over the word, or click to view the full glossary page. Visitors can also browse the full glossary<http://www.babysfirsttest.org/newborn-screening/glossary> to become better acquainted with newborn screening terms. ________________________________ * Blog – The blog is a central component of the site and is key to highlighting important issues in newborn screening. We are currently featuring a number of blogs<http://www.babysfirsttest.org/newborn-screening/blog> written by parents, including our consumer task force members who are sharing why newborn screening is important to them. If there are any topics you believe Baby’s First Test should highlight or are interested in sharing your views on newborn screening, please contact Elizabeth Stark at [log in to unmask]<mailto:[log in to unmask]>. ________________________________ * New condition pages – 25 new condition pages have been added to represent those conditions that states screen for that are not on the RUSP. We are excited to be more fully representing state panels and are glad to educate the public about the great work that the state programs are doing. Challenge Awards Update Bronx Lebanon Hospital Center – This project is currently evaluating the Baby's <http://www.babysfirsttest.org/asides/video/march-dimes-video-learning-about-newborn-screening> First Test and March of Dimes <http://www.babysfirsttest.org/asides/video/march-dimes-video-learning-about-newborn-screening> newborn screening video <http://www.babysfirsttest.org/asides/video/march-dimes-video-learning-about-newborn-screening> as an intervention to increase parental awareness and follow-up on abnormal newborn screening results. Parents will be assigned to either the intervention group (will see the NBS video) or the control group (will receive the standard hospital pamphlet) depending on which day their baby is born. All participants will receive a follow-up phone call gauging their retention of the newborn screening information. This group will also be measuring the length of time it takes for an abnormal newborn screen to be followed up on to see if there is a difference between the two groups. Chicago Center for Jewish Genetic Disorders – This community based organization has created and distributed educational materials highlighting the Baby’s First Test website. Genetic counseling students and lead nurses planned and executed a number of community and healthcare provider presentations. The presentations and written materials highlighted Baby’s First Test for use as a primary resource for health department nurses and their clients. Children's National Medical Center – Through their very active Heart Smart project, Children’s National has created two educational videos discussing pulse oximetry and its use in detecting critical congenital heart disease. One video informs providers who are adopting the practice at their hospital and the other is geared towards explaining why this is so important to the parents. Both videos are currently in post-production and will be released shortly. Cora's Story – This project increases awareness of newborn screening, and in particular, pulse-oximetry by engaging social media resources. From starting a blogger ambassador program to hosting webinars and twitter chats, this social media savvy mom is making the connection of why newborn screening is so important to expectant parents. University of Iowa – The State Hygienic Laboratory and School of Journalism have teamed up to create an updated video detailing how the newborn bloodspot should be collected. Based on previous focus groups, this video follows CLSI standards and answers many of the questions that nurses and other health professionals have about newborn blood spot collection. University of Pittsburgh – This project has developed a web-based application that introduced pregnant women to genetics while sitting in the waiting room. Ethnicity based carrier screening and newborn screening facts are woven into an interactive program that aims to help women feel more confident about the tests they are being offered. This program is currently live in the clinical setting and being evaluated. Consumer Task Force on Newborn Screening The 2012 Consumer Task Force is well under way! Task force members have recently completed 4 training calls and are now working on developing their independent outreach projects. The training calls included such topics as national newborn screening perspectives, states perspectives, and social media training. In their projects, task force members will be targeting a wide range of sub-populations including rural moms, African American moms, first time/teen moms, the hearing loss community, the immigrant Chinese population in Boston, the international community, NICU nurses and more. The task force members will also be joining us at the 27th SACHDNC meeting in Alexandria, VA to make a public comment and meet leaders in the newborn screening field. To learn more about the new members of our Task Force visit our Consumer Task Force<http://www.babysfirsttest.org/newborn-screening/consumer-task-force> page on Baby’s First Test or check out their individual posts on the Baby’s First Test Blog<http://www.babysfirsttest.org/newborn-screening/blog>. SACHDNC 27th Meeting – May 17-18, 2012 On Thursday, May 17th and Friday, May 18th, the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children (SACHDNC) will host its 27th meeting in Alexandria, VA. To access the detailed agenda, please visit the event registration website.<http://altarum.cvent.com/events/sachdnc-may-17-18-2012/event-summary-91dbbdbb17ba4be9a51145b5570ce96e.aspx> Genetic Alliance’s newborn screening team, as well as many of our Consumer Task Force members, will be at the Advisory Committee meeting and sharing updates and action items via Twitter. Follow @BabysFirstTest<http://twitter.com/babysfirsttest> and @GeneticAlliance<http://twitter.com/geneticalliance> to join the conversation. We hope to see you there! NBS in the News * Ethical issues with newborn screening in the genomics era.<http://www.ncbi.nlm.nih.gov/pubmed?term=beth%20tarini%20whole%20genome%20sequencing> * Colorado<http://www.thedenverchannel.com/health/30484616/detail.html>, Texas<http://idfscidnewbornscreening.org/2012/05/03/texas-to-test-newborns-for-scid-a-life-threatening-immune-disorder/> and Florida<http://capitalsoup.com/2012/04/17/gov-scott-approves-scid-screening-florida-becomes-11th-state-to-require-life-saving-test-for-newborns/> to add SCID to their newborn screening panels. * California<http://www.californiahealthline.org/capitol-desk/2012/4/funding-may-be-issue-for-newborn-screening.aspx> is one step closer to adding pulse-ox to screen newborns for CCHD. * A new model shows DMD could be a part of newborn screening<http://newsblaze.com/story/2012031912293500002.wi/topstory.html>. * Grant awarded to study long-term outcomes and cost effectiveness of newborn screening.<http://www.healthcanal.com/pregnancy-childbirth/27115-University-Michigan-researchers-study-health-outcomes-and-economics-newborn-screening.html> Visit Newborn Screening in the News<http://www.babysfirsttest.org/newborn-screening/newborn-screening-in-the-news> to keep up to date on the latest issues affecting newborn screening. Posters and Presentations of Baby’s First Test Recent Events: * Presented and Exhibited at the Association of Maternal and Child Health Programs Annual Conference: February 12-14, 2012 * Poster Presentation at the American College of Medical Genetics Annual Clinical Genetics Meeting: March 27-31, 2012 Upcoming Events: * Exhibiting at the Association of Women’s Health, Obstetrics and Neonatal Nurses Conference: June 23-27, 2012 * Abstract submitted and exhibiting at the National Society of Genetic Counselors Annual Education Conference: October 24-27, 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]<mailto:[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]<mailto:[log in to unmask]> Elizabeth Stark – Project Manager, [log in to unmask]<mailto:[log in to unmask]> Mark Petruniak – New Media Coordinator If you received this from a friend and would like to subscribe, click here<http://www.galists.org/read/all_forums/subscribe?name=nbsnewsletter>. To unsubscribe, please click here<http://listserv.galists.org/u?id=228877.ccd8acfb4d0131f6d8bf8e99f77481f0&n=T&l=nbsnewsletter&o=663578>. Except where otherwise noted, content on this site is licensed under a Creative Commons Attribution 3.0 License.