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Monthly Newsletter
December 2016, Issue #37

Dear Partners and Friends in Newborn Screening,

As 2016 comes to a close, there is much to be excited about in newborn screening. This year we saw more states adding SCID to their panels. The Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) recommended MPS1 and X-linked ALD be added to the Recommended Uniformed Screening Panel (RUSP), and the Secretary of Health and Human Services approved both conditions in February 2016. In 2017, there will be additional efforts to help states integrate these conditions into their programs as well as more of a focus filling the educational gap for parents. 

Timeliness once again was a prominent topic. While the recently released GAO report shows many states continue to struggle to meet the recommendations, there are many projects in place and a strong commitment from families, clinicians, and program staff to help move the needle in the right direction. It’s clear that more lessons learned will be shared in the upcoming year. 

Baby’s First Test continues to reach more people and expand its offerings. With the recent launch of the Newborn Screening Public Square and Resource Center, we are looking forward to providing more opportunities for active dialogue on key topics and for families and health professionals to share useful resources and effective strategies. Just last month we had our 2 millionth session (hit) to the site. We are grateful to all of you for contributing to and sharing this information with your partners, colleagues, and family networks throughout the year. 

With recent reports looking at areas of potential improvements in newborn screening, I believe 2017 will be a year of more collaboration, open dialogue, and shared learning for NBS programs, clinicians, families and all members of this community.

Though we know newborn screening never stops, we wish you all a restful holiday season and all the best in the New Year,

Natasha and the Baby’s First Test team

Registration Now Open!
Beyond the Bloodspot: Education and Engagement Summit
Baby's First Test will host a two-day education and engagement summit on newborn screening on April 26 - 27, 2017 in Washington, DC. Goals for the summit and a draft agenda will be available in early January. For updates, please visit
Register Now
Call for Condition Workgroups
Baby’s First Test has partnered with the Association of Public Health Laboratories (APHL)'s NewSTEPs program to launch an initiative supporting education for families and healthcare providers as states implement screening for the three newest RUSP conditions: X-linked Adrenoleukodystrophy (X-ALD), Mucopolysaccharoidosis Type 1 (MPS I), and Pompe disease.
To help us survey the educational landscape as it currently stands, we’re assembling three condition-specific workgroups made up of advocates, parents, and clinicians to meet via phone and/or webinar six times per year/bi-monthly for one hour. Compensation is a $500 stipend. We encourage you to share this opportunity with families and other advocates in your networks who are passionate about newborn screening education.
If you are interested in participating in a workgroup, please contact Amelia Mulford at by January 6, 2017 EOD.
Introducing Expecting Health
Your Go-To Guide for Pregnancy, Parenting, and Beyond

Baby's First Test is often asked to share general maternal and child health (MCH) information through our various platforms, including social media and our monthly newsletter. While Baby’s First Test will continue to include relevant MCH information, be sure to follow Genetic Alliance's newest initiative, Expecting Health, on Facebook and Twitter for the latest maternal and child health information - everything from planning a pregnancy to early infant care!
Follow Expecting Health on Twitter
Like Expecting Health on Facebook
Resource of the Month 
Webinar: 5 Years of a National Educational Initiative 

In 2016, celebrated its fifth year as the nation's newborn screening clearinghouse. This webinar recording provides an overview of since its inception in 2011; explores new features on, including our interactive Newborn Screening Public Square; and shares findings from our 2015 - 2016 user satisfaction survey.
Watch Webinar
Community Corner

APHA 2017 Call for Abstracts Now Open
The American Public Health Association (APHA) is now accepting abstracts for the APHA 2017 Annual Meeting & Expo. The theme of the meeting is Creating the Healthiest Nation: Climate Changes Health. Authors are encouraged to submit abstracts on the theme and current and emerging public health issues. Abstracts are due between Feb. 20-24, 2017. For rules, requirements, or more details, click here.

State Statutes & Regulations on Dietary Treatment of Newborn Screening Disorders
Individuals with genetic disorders, identified through newborn screening, may require Modified Low Protein Foods (MLPFs), medical foods, dietary supplements, and other dietary treatments as well as enteral feeding supplies. The Catalyst Center, in partnership with the National Coordinating Center for Genetic Service Collaboratives (NCC), reviewed existing medical foods statutes and regulations to provide an updated, comprehensive review of every state's policy.  The report includes definitions of medical foods, an overview of state coverage, and in-depth examination of each state's (including DC and Puerto Rico) legislation. To read the report, click here.
Newborn News: Story of the Month
 GAO Releases Report on Newborn Screening Timeliness
Source: US Government Accountability Office
Stay Connected

Internship Opportunities

Maternal and Child Health Summer Intern
Genetic Alliance
Deadline: February 10, 2017
Stipend Available 
For more details, click here.
To apply, click here.

Webinar Recordings

5 Years of a National Educational Initiative 
Baby's First Test
December 6, 2016
To watch, click here.

CCHD: Using State Birth Defects Registries to Evaluate Outcomes of CCHD Newborn Screening
Association of Public Health Laboratories (APHL)
December 9, 2016
To watch, click here.

All-Awardee Meeting: NBS Tools for Hospitals
NewSTEPs 360 
December 13, 2016
To watch, click here.

Upcoming Meetings

Annual Early Hearing Detection and Intervention Meeting
Sunday, February 26 - Tuesday, February 28, 2017
Atlanta, GA
For more information, click here.

AMCHP Annual Conference 2017
Association of Maternal & Child Health Programs (AMCHP)
Saturday, March 4 - Tuesday, March 7, 2017
Kansas City, MO
For more information, click here.

Genetic Alliance 30th Anniversary Conference & Celebration
Genetic Alliance 
Thursday, March 9 - Friday, March 10, 2017
Washington, DC
For more information, click here.

ACMG Annual Clinical Genetics Meeting
American College of Medical Genetics and Genomics (ACMG)
Tuesday, March 21 - Saturday, March 25, 2017
Phoenix, AZ
For more information, click here.

Beyond the Bloodspot: Education and Engagement Summit
Baby's First Test
Wednesday, April 26 - Thursday, April 27, 2017
Washington, DC
To register, click here.
ACOG Releases Zika Toolkit to Assist Providers
House Passes Clark Postpartum Depression Legislation
Journal Sentinel Publishes Newborn Screening Report
Scholarly Article of the Month

An Evaluation of Pregnant Women's Knowledge and Attitudes

about Newborn Bloodspot Screening

Read More
Funding Opportunities

The MCH Adolescent and Young Adult Health Research Network
Deadline: Friday, January 6, 2017
For more details, click here.

Sickle Cell Disease Treatment Demonstration Regional Collaboratives Program
Deadline: Friday, January 13, 2017
For more details, click here

Health Care Delivery System Innovations for Children with Medical Complexity
Deadline: Monday, February 27, 2017
For more details, click here.

Innovative Therapies and Tools for Screenable Disorders in Newborns (R21)
Deadline: Thursday, September 7, 2017
For more details, click here.

To view (R01) (R03), click here.

Natural History of Disorders Identifiable by Screening of Newborns (R01)
Deadline: Wednesday, May 8, 2019
For more details, click here.
The Baby's First Test team wishes you
and all of your loved ones a very happy holiday season!

The National Clearinghouse is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under Cooperative Agreement no. U36MC16509 (Quality Assessment of the Newborn Screening System. Total award amount: $2,900,000). This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government. 

Copyright © 2016 Genetic Alliance, All rights reserved.
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