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Communication for the Heartland Regional Genetics Group

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"Whitehead, Shona R. (HSC)" <[log in to unmask]>
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Communication for the Heartland Regional Genetics Group <[log in to unmask]>
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From: Natasha Bonhomme [mailto:[log in to unmask]]
Sent: Wednesday, September 21, 2011 4:17 PM
Subject: Quarterly Newborn Screening Newsletter - Issue #4

[http://www.geneticalliance.org/sites/default/files/ksc_assets/images/btf_logo.png]<http://listserv.galists.org/t/611143/228877/1826/0/>
Quarterly Newborn Screening
Newsletter
Brought to you by Genetic Alliance
September 21, 2011 Issue #4
IN THIS ISSUE

Baby's First Test

Challenge Awards

Consumer Task Force

SACHDNC Meeting

NBS in the News

Posters and Presentations

Contact Us
View the web version<http://listserv.galists.org/t/611143/228877/1047/0/>
Baby's First Test

Launch of BabysFirstTest.org
As a result of the 2008 Newborn Screening Saves Lives Act, Genetic Alliance received a federal cooperative agreement from HRSA to create www.BabysFirstTest.org<http://www.BabysFirstTest.org>, a clearinghouse of reputable, up-to-date information on a variety of topics related to newborn screening, including:
- state-specific pages listing state mandated testing
- information on conditions screened
- the process of newborn screening
- what is a “false positive” test result
- support organizations that parents can connect with if their child is found to have one of the conditions.

This dynamic resource highlights the range of experiences individuals have with newborn screening and provides tailored information to meet the needs of both healthcare providers and parents. It is also a guide to help families navigate the newborn screening process, which can sometimes feel overwhelming.

We are thankful for all of the support and hard work that our state and disease specific organization partners have put in and are excited to share this resource with the entire newborn screening community. If you have a resource or project that you would like featured on BabysFirstTest.org, please contact Natasha Bonhomme, project director, at [log in to unmask]<mailto:[log in to unmask]>.
Challenge Awards Update

Our first set of Challenge Awardees are nearing the completion of their projects and have some exciting updates to share:

Association of Public Health Laboratories (APHL)
APHL has been busy utilizing social media to increase awareness of newborn screening. Specifically, they launched newborn screening twitter and Facebook accounts, held twitter chats, produced videos highlighting key figures in the newborn screening community, produced a brochure on newborn screening, and launched a website dedicated to furthering information on newborn screening<http://www.aphl.org/aphlprograms/nsg/babysfirst/pages/default.aspx>. They will continue to promote newborn screening awareness by reaching out to their partners through social media connections and helping to facilitate production of a video detailing the laboratory process of newborn screening.

Hawaii Department of Health
During summer 2011, the Hawaii Genetics Program assessed online health information-seeking behaviors of attendees at the Hawaii Baby Expo (a gathering of diverse consumers interested in prenatal to preschool issues, products, and information) and patients at Hawaii Women, Infant, and Children clinics (where families attend supplemental nutrition programs). 868 surveys were completed via iPad (n=560) or paper (n=308). Data was entered into a database and analyzed using SPSS version 11.5. Participants of Asian (52%), Hawaiian (16%), and Pacific Islander (3.5%) background were well represented; 35.1% were of two or more ethnicities. Over 97% of participants spend at least 1-2 hours per day online for personal use. Over 92% had searched online for health information (84% in the last month). When looking for health answers, participants searched the internet (50%), asked a doctor (31%), or asked family/friends (17%). Participants most commonly searched online when worried about being sick (50%) or after seeing a news story (19%). Results suggest that the internet can be effectively used to disseminate accurate NBS information, particularly if the NBS Clearinghouse website is developed in a way that maximizes visitors.

March of Dimes
As part of its ongoing “Healthy Pregnancy, Healthy Babies” series, March of Dimes has developed and produced a 2.5 minute video vignette in English and Spanish depicting an obstetrician discussing newborn screening with her patient in a prenatal office visit setting. The video recently was released on YouTube as well as the March of Dimes and Baby’s First Test websites. March of Dimes and Genetic Alliance are coordinating social media activities to support the dissemination of the online videos. Next steps for this project include pressing and disseminating a DVD collection of prenatal education videos that includes the newborn screening video.

New York Mid-Atlantic Consortium
NYMAC facilitated a childbirth educator meeting in Baltimore, MD. Twenty-four doulas, nurse-midwives, and childbirth educators from all of the NYMAC states except Delaware attended the meeting. For the toolkit, the participants agreed that having a wide range of resources on newborn screening in one place that they could access would be helpful. About 2/3 of the participants agreed to participate in a pilot of these resources with their respective patient populations. Participants also agreed to continue working with NYMAC as a specific interest group focused on educating childbirth educators.

The 2012 Challenge Awards request for proposals will be announced in October – stay tuned!
Consumer Task Force on Newborn Screening

The Consumer Task Force on Newborn Screening was created in 2008 to engage parents with an interest in newborn screening policies, activities, and current events. This program is relaunching this winter and is currently accepting applications for members for the upcoming year. The two primary elements of this program are training and project development. New members of the Task Force will be trained on issues relevant to newborn screening and will create projects targeting groups who typically are under-informed about the importance of newborn screening. A key educational/reference tool for these projects will be www.BabysFirstTest.org<http://www.BabysFirstTest.org>. After serving on the Task Force, members will be equipped with the skills and knowledge of newborn screening to continue work on this or other maternal and child health related issues. Upon completion of participation in the Task Force activities, members will receive a certificate acknowledging the training they received. No previous experience is necessary, only a desire to learn about and impact the newborn screening community.

For more information, please see the full request for applications at: http://www.babysfirsttest.org/innovation
SACHDNC 25th Meeting – September 22-23, 2011

On Thursday, September 22nd and Friday, September 23rd, the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children (SACHDNC) will host its 24th meeting in Washington, DC. To access the detailed agenda, please visit the event registration website<http://altarum.cvent.com/events/sachdnc-september-22-23-2011/event-summary-338b4cc8bebd4327b0fb48ec4f7e78a2.aspx?i=065b35f6-e97c-4153-b823-b0725249583f>.

Genetic Alliance’s newborn screening team 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

Congenital heart disease screening recommended for newborns<http://articles.latimes.com/2011/aug/21/health/la-he-heart-screening-20110822>

Highlights of the new WHO Report on Newborn and Infant Hearing Screening and implications for developing countries.<http://www.ncbi.nlm.nih.gov/pubmed/21728253>

Parents’ anxiety about newborn screening results does not lead to increased health care use<http://www.uofmhealth.org/News/anxiety-false-positive>
Posters and Presentations of Baby’s First Test

 *   NYMAC Birth educators and doulas meeting, Baltimore MD
 *   Association of Public Health Laboratories – Newborn Screening and Genetic Testing Symposium, San Diego CA
 *   National Society of Genetic Counselors – Annual Education Conference, San Diego CA
 *   Western States Regional Genetics Collaborative, Seattle WA
 *   Region 4 Genetics Collaborative, Lansing MI
 *   Mountain States Genetics Regional Collaborative, Denver CO

________________________________

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]>
Tara Biagi – Project Coordinator, [log in to unmask]<mailto:[log in to unmask]>
Mark Petruniak – New Media Coordinator

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