Shona R. Whitehead
Program Coordinator
Heartland Genetics and Newborn Screening Collaborative
405-271-8001 ext. 42190
From: Natasha Bonhomme [mailto:[log in to unmask]]
Sent: Friday, January 27, 2012 10:00 AM
To: Whitehead, Shona R. (HSC)
Subject: [nbsnewsletter] Quarterly Newborn Screening Newsletter - Issue #5
[http://www.geneticalliance.org/sites/default/files/ksc_assets/images/ga_logo.png]<http://listserv.galists.org/t/638936/228877/2034/0/>
Newborn Screening
Quarterly Newsletter
Brought to you by Genetic Alliance
January 27, 2012 Issue #5
IN THIS ISSUE
Consumer Task Force
Baby’s First Test
Challenge Awards
Upcoming Events
NBS in the News
Grant Opportunities
Posters and Presentations
Contact
View web Version<http://listserv.galists.org/t/638936/228877/2033/0/>
Consumer Task Force on Newborn Screening
The newest members of our Consumer Task Force have already started meeting and are excited to expand awareness of newborn screening. This is the most diverse and active Task Force we have had with members representing a variety of regions, disorders, and viewpoints. This year’s Task Force includes eight parents with children who have been impacted by newborn screening (include 3 who are also nurses!), one laboratory researcher and one nurse with over 20 years of experience sharing information with new moms. Each member of the Task Force is participating in a training component to learn the ins and outs of the national and state newborn screening programs and will complete an individual project promoting newborn screening awareness with a typically underserved community. To learn more about the individual members of our Task Force, visit our Consumer Task Force<http://www.babysfirsttest.org/consumer-task-force> page on Baby’s First Test.
Baby’s First Test
Baby’s First Test<http://www.babysfirsttest.org> continues to receive many positive responses and helpful feedback from groups and individuals who have viewed the site. We have recently completed our initial usability testing that collected both quantitative and qualitative data as participants used the site. The project team will present this data at the Association of Maternal and Child Health Programs (AMCHP) conference in February 2012<http://www.amchp.org/Calendar/Conferences/amchp-conference/Pages/default.aspx>.
Based on feedback from our partners, in addition to the conditions listed on the Recommended Uniform Screening Panel<http://www.babysfirsttest.org/find-condition#1> (RUSP), there are now condition pages for Fabry<http://www.babysfirsttest.org/conditions/fabry-disease> and Krabbe<http://www.babysfirsttest.org/conditions/krabbe-disease> diseases. By Spring 2012, the project team will add 23 additional condition pages to the site and link them appropriately to the state pages.
Challenge Awards
In response to our request for proposals, we received 21 applications for the 2012 Challenge Awards<http://www.babysfirsttest.org/challenge-awards>, doubling the number of requests received in 2011. 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. We are very excited to partner with these organizations that will be focusing on some very exciting projects including CCHD awareness and using social media to reach new and expecting moms. The awardees will be publicly announced in early February.
Upcoming Events
Now that 2012 is well under way, it’s time to start looking at all the newborn screening related meetings coming up this year.
February
Association of Maternal and Child Health Programs (AMCHP)<http://www.amchp.org/Calendar/Conferences/amchp-conference/Pages/default.aspx>
Annual Conference
February 11-14, 2012
Omni Shoreham Hotel, Washington DC
March
Early Hearing Detection and Intervention (EHDI)<http://ehdiconference.org/>
11th Annual Conference
March 5-6, 2012
The Conference of the Global Sickle Cell Disease Network<http://www.globalsicklecelldisease.org/OurResources/upcomingevents/2012/blooddisordersconfevent2011.aspx>
March 15, 2012
Westin Atlanta Perimeter North, Atlanta, GA
The National Conference of Neonatal Nursing<http://www.contemporaryforums.com/Live-CE-Conferences/The-National-Conference-of-Neonatal-Nursing/>
March 21-24, 2012
Hyatt Regency Grand Cypress, Orlando, FL
American College of Medical Genetics<http://www.acmgmeeting.net/acmg2012/public/enter.aspx>
2012 Annual Clinical Genetics Meeting
March 27-31, 2012
Charlotte, NC
Society for Inherited Metabolic Disorders<http://www.simd.org/meetings/SIMD2012/>
35th Annual Meeting
March 31- April 3, 2012
Westin Charlotte in Charlotte, NC
NBS in the News
Genetic Alliance’s newborn screening team keeps up to date with all of the latest news in newborn screening. Follow @BabysFirstTest<http://twitter.com/babysfirsttest> and @GeneticAlliance<http://twitter.com/geneticalliance> to join the conversation.
New DNA reader shows promise as being the first $1000 genome<http://www.reuters.com/article/2012/01/10/us-dna-reader-idUSTRE8090B820120110>
American Academy of Pediatrics endorses Health and Human Services recommendation for Pulse Oximetry screening for Critical Congenital Heart Disease<http://pediatrics.aappublications.org/content/129/1/190.full>
MN parents sue state and department of public health over retained newborn screening blood samples<http://www.courthousenews.com/2012/01/19/43164.htm>
CHOP to create long-term newborn screening data repository<http://www.genomeweb.com/chop-create-long-term-newborn-screening-data-repository>
Liver transplant used to treat urea cycle disorder<http://www.istockanalyst.com/business/news/5595065/midwest-s-first-liver-cell-transplant-for-baby-with-life-threatening-urea-cycle-disorder-performed-at-children-s-memorial>
Visit Newborn Screening in the News<http://www.babysfirsttest.org/newborn-screening/newborn-screening-news> to keep up to date on the latest issues affecting newborn screening.
Grant Opportunities
This year has already provided multiple grant opportunities for those interested in furthering understanding and implementation of newborn screening. Some of the more recent opportunities include:
Critical Congenital Heart Disease Newborn Screening Demonstration Program<https://grants.hrsa.gov/webExternal/FundingOppDetails.asp?FundingCycleId=915AFF05-259F-4AD5-9535-EEE225FA6D33&ViewMode=EU&GoBack=&PrintMode=&OnlineAvailabilityFlag=&pageNumber=&version=&NC=&Popup=>
Newborn Screening Technical Assistance and Data Repository Program<https://grants.hrsa.gov/webexternal/FundingOppDetails.asp?FundingCycleId=AADC442E-3C6D-41A9-B30E-6905D26F61F9&ViewMode=EU&GoBack=&PrintMode=&OnlineAvailabilityFlag=True&pageNumber=1&Popup=>
Regional Genetic and Newborn Screening Services Collaboratives: Heritable Disorders Program <https://grants.hrsa.gov/webExternal/FundingOppDetails.asp?FundingCycleId=82DBA473-BB30-475B-B59D-82B5F39A7B20&ViewMode=EU&GoBack=&PrintMode=&OnlineAvailabilityFlag=&pageNumber=&version=&NC=&Popup=>
For additional information on these and other newborn screening grants visit our Funding Opportunities<http://www.babysfirsttest.org/funding-opportunities> page.
Posters and Presentations
* Exhibit at the National Society of Genetic Counselors Annual Education Conference: October 27- 30, 2011
* Exhibit at the American Public Health Association: October 30-November 2, 2011
* Poster at the Association of Public Health Laboratories: November 6-10, 2011
* Workshop on the Importance of Public Education around Newborn Screening at APHL Annual Meeting
* Presentation at the New England Genetics Collaborative Annual Meeting: November 15-16, 2011
Upcoming Presentations:
* Presentation at the Association of Maternal and Child Health Programs Annual Conference: February 12-14, 2012
* Poster presentation for the American College of Medical Genetics Annual Clinical Genetics Meeting: March 27-31, 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, [log in to unmask]<mailto:[log in to unmask]>
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, [log in to unmask]<mailto:[log in to unmask]>
To unsubscribe, please send a blank email to [log in to unmask]<mailto:[log in to unmask]>.
Except where otherwise noted, content on this site is licensed under a
Creative Commons Attribution 3.0 License.
|
