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]>
Wed, 7 Dec 2011 16:15:35 -0600
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From: Natasha Bonhomme [mailto:[log in to unmask]]
Sent: Wednesday, December 07, 2011 3:59 PM
Subject: Baby's First Test NAC Quarterly Newsletter - 7 December 2011

Baby's First Test
NAC Quarterly Newsletter
Brought to you by Genetic Alliance
December 7, 2011

Update on BabysFirstTest.org

Web Presence

Challenge Awards

Consumer Task Force Update

Newborn Screening Quality Indicators

Posters and Presentations

The Baby’s First Test: Newborn Screening Clearinghouse Newsletter provides updates on this Genetic Alliance project for the National Advisory Committee. 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]>.
Update on BabysFirstTest.org

On September 7, 2011, the newborn screening clearinghouse relaunched as Baby’s First Test, a comprehensive newborn screening web tool. We are excited about the positive responses and helpful feedback received from groups and individuals who have viewed the site, We look forward to expanding our outreach to networks that can benefit from easy access to this information. Here are some updates on various aspects of the site that will be further discussed on the NAC call:

 *   User Acceptance Testing – User acceptance testing is in progress. The project team collects both quantitative and qualitative data and uses this information to improve the Baby’s First Test user experience. The project team will present this data at the Association of Maternal and Child Health Programs (AMCHP) conference in February 2012.
 *   Community Corner – Each week we highlight a different organization related to newborn screening and maternal and child health that are sharing information about Baby’s First Test through their website, newsletter, and/or blog. So far we are excited to partner with such organizations as the March of Dimes, Cystic Fibrosis Research Inc., 1in100, and others to promote the new site and educate about newborn screening. Be sure to check back each week to meet our new partner<http://www.babysfirsttest.org/community-corner>.
 *   Blog – The blog is a central component of the site and is key to highlighting important issues in newborn screening. Since the launch, the team blogged about a range of topics including how a new condition was added to the Recommended Uniform Screening Panel<http://www.babysfirsttest.org/find-condition#1>, advances in the treatment of Cystic Fibrosis, and the addition of CCHD. We also hosted a guest post from Jana Monaco<http://www.babysfirsttest.org/blog/one-familys-loss-and-nations-gain> reflecting on her 10 years in newborn screening. 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 – We are in the process of adding a range of condition pages to the site. In addition to the conditions listed on the Recommended Uniform Screening Panel<http://www.babysfirsttest.org/find-condition#1> (RUSP), there is now a page for Critical Congenital Heart Disease<http://www.babysfirsttest.org/find-condition/critical-congenital-heart-disease>. By the end of the year, the project team will add Fabry and Krabbe diseases. By Spring 2012, the project team will add 23 condition pages to the site and link them appropriately to the state pages.
 *   Additional Information on state pages – After many discussions with state laboratory and follow up leaders and the web development team, we added a new functionality allowing Baby’s First Test to show conditions both as they are listed on the RUSP and as states choose. We believe this is a beneficial solution to reflect both what states deem appropriate and allowing for consistency across state pages.
Web Presence

Since the launch, the site received 11,832 visits and over 42,000 page views. Most of the traffic comes from direct traffic such as clicking on the link from an announcement or twitter post. People from over 105 countries have viewed the site with the top five being Canada, UK, India, Australia, and the Philippines.
Challenge Awards

In response to our request for proposals, we recieved 21 applications for the 2012 Challenge Awards. 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. Genetic Alliance will publicly announce the Awardees in January 2012.
Consumer Task Force Update

We received a tremendous response to our call for applications for our 2012 Consumer Task Force on Newborn Screening. This year the task force will have both a training and project component. We are excited about the applicants and look forward to officially announcing the selected group in January 2012.
Newborn Screening Quality Indicators

During 2012, Genetic Alliance will continue to work with APHL to further efforts to harmonize quality indicators used across state newborn screening programs. APHL, through funding from Genetic Alliance, will speak with states regarding the feasibility of implementing certain quality indicators to garner further feedback. More information regarding timelines will be available in January 2012.
Posters and Presentations

The Baby’s First Test team is sharing information about both the new site and the programmatic work at professional conferences and meetings through posters, presentations, and a new exhibit booth. We are eager to share this resource with the public and specific health professional groups. Please send suggestions for presentations and exhibiting to Elizabeth Stark at [log in to unmask]<mailto:[log in to unmask]>.

Recent Events:

 *   Exhibit at the National Society of Genetic Counselors Annual Education Conference: October 27- October 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
 *   Presentation at the New England Genetics Collaborative Annual Meeting: November 15-16, 2011

Upcoming Events:

 *   Presentation at the Association of Maternal and Child Health Programs Annual Conference: February 12-14, 2012
 *   Abstract submitted for the American College of Medical Genetics Annual Clinical Genetics Meeting: March 27-31, 2012

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]>
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