Did You Know

NewSTEPs "Did You Know" emails are distributed through the listserv and include quick facts, reports, figures and web links updating the community on various aspects of newborn screening. Below you will find a summary of all previous "Did You Know" emails. If you have any requests or input regarding the information disseminated, please contact Sari Edelman with your thoughts and ideas.

April 20, 2017

Did you know... that currently four states are universally screening for MPS-1, five for Pompe, five for X-ALD and 45 for SCID? You can review the screening status of all Recommended Uniform Screening Panel (RUSP) disorders for all US newborn screening programs through an interactive dashboard on the NewSTEPs website. The dashboard includes a map which allows you to view the screening status of any core and secondary RUSP disorder for which data is collected in the NewSTEPs Data Repository. The dashboard also includes a heat map to view how many core RUSP disorders are being screened in each state or territory, and a table of disorders screened in each state or territory. To update your state's screening status log into the data repository and enter appropriate screening data by selecting the "disorders" tab and then selecting the "edit" icon in the upper right hand corner. You may also contact your state administrator, who you can locate by clicking on your state profile under "contacts." There are several data dashboards now available displaying NBS program operating hours, Health Information Technology activities, etc. State tuned for more exciting new infographics to come!

March 8, 2017

Did you know...that some of the most meaningful and useful content presented at the Newborn Screening and Genetic Testing Symposium (NBSGTS) comes directly from state newborn screening programs? For instance, at the 2014 NBSGTS, Celia Nabor of the Arizona NBS program presented on strategies used in partnering with hospitals to improve the number of hospitals shipping NBS specimens received within 72 hours of receipt from 67% in 2013 to 89% in 2014. At the 2016 NBSGTS, Amy Gaviglio of the Minnesota NBS program presented on their successes in improving NBS processes for out-of-hospital births through communication outreach and training initiatives.The Newborn Screening and Genetic Testing Symposium is completely abstract-driven. Submit abstracts now on topics ranging from cutoffs to Health Information Technology (HIT), and be a part of shaping sessions and content for this meeting! For the full list of abstract topics, see the Call for Abstracts. The submission deadline for abstracts is March 31, 2017.

February 7, 2017

Did you know...that NewSTEPs provides a non-regulatory site review visit aimed at assessing various components of a newborn screening program including the laboratory system, birth facilities, and follow-up system for quality improvement purposes? The comprehensive site review visit is facilitated by a team of experts, chosen depending on program needs that evaluate various programmatic areas including state legislation and policy, ethics, funding models, organizational structure, point of care testing, education and more. The guided, comprehensive site reviews occur on a scheduled basis followed by a written report and recommendations. More information about site reviews and scheduling can be found linked here.

January 24, 2017

Did you know...that the NewSTEPs website is a dynamic, comprehensive center for important newborn screening resources and information? The NewSTEPs website provides access to technical assistance resources including, but not limited to, timeliness practices and archived webinars. NewSTEPs is excited to work with a new website vendor to update and redesign the NewSTEPs website. If you have any suggestions or feedback regarding the NewSTEPs website, please contact Sari Edelman at sari.edelman@aphl.org.

December 7, 2016

Did you know...that NewSTEPs has a series of activities to support Short Term Follow Up stakeholders? The first in-person meeting dedicated to Short Term Follow Up was held in Orlando, Florida on October 25-26, 2016. The 49 attendees discussed hospital buy-in, tracking false negatives, co-location of laboratory with follow up, and funding challenges. Attendees also participated in the half-day Cystic Fibrosis Quality Improvement Consortium meeting the following day. The Short Term Follow Up Webinar Series can be found linked here .

October 18, 2016

Did you know...that NewSTEPs supports more than just the blood spot program? The Center for Disease Control and Prevention (CDC) recently conducted a Grand Rounds focused on Beyond the Bloodspot. Providing information on data was NewSTEPs Associate Director, Dr. Marci Sontag, along with Dr. Stuart Shapira, Dr. Kim Van Naarden Braun and Dr. Craig Mason. NewSTEPs hosts CCHD webinars on a quarterly basis to provide pertinent information to the CCHD community. Previously recorded CCHD webinars can be found linked here. Other resources available through NewSTEPs are on the Quality Practice Resources page .

October 5, 2016

Did you know...that significant improvements in newborn screening timeliness have been attributed to implementing creative solutions to reduce transit times, coupled with expanded operating hours? Of the 27 programs that submitted data to NewSTEPs for this measure (operating hours and reporting results) for 2015, 66.7% of laboratories open seven days a week achieved the goal of reporting 95% of specimens with normal or out-of-range results for all disorders by seven days of life. Visit the NewSTEPs Data Repository to locate your State Administrator and update your data in the repository.

September 16, 2016

Did You Know... that the Cystic Fibrosis Foundation (CFF) is partnering with NewSTEPs to improve timeliness in newborn screening? The CFF has a long standing commitment to improving the timeliness of diagnosis and the quality of care, complementing NewSTEPs 360 activities to improve newborn screening timeliness throughout the United States. Highlighted activities of the NewSTEPs-CFF Partnership can be found linked in the Association of Maternal & Child Health's Newsletter and in APHL's Lab Matters.

December 3, 2015

Did You Know... that earlier this fall Alabama held a newborn screening symposium with participation from hospitals throughout the state? The focus of this year's conference was on the implementation of various newborn screening disorders in Alabama, and included a presentation by Dr. Harvard L. Levy discussing the history of NBS. A Youtube video of this presentation can be watched by clicking this link.

October 29, 2015

Did You Know... that 54% of US state newborn screening programs have signed or are close to signing the NewSTEPs Memorandum of Understanding (MOU)? For details on the MOU process as well as for benefits of signing the MOU, please click here.

October 7, 2015

Did You Know... that NewSTEPs offers technical assistance for Critical Congenital Heart Disease (CCHD) related newborn screening?  The following CCHD resources are available on the NewSTEPs website: bi-monthly webinars, educational resources, and a summary and presentations from an in-person CCHD meeting hosted by NewSTEPs.

September 28, 2015

Did You Know... that in late July 100 representatives from 41 states, Puerto Rico and the District of Columbia convened in Bethesda, MD to address current challenges faced by US newborn screening programs in implementing Severe Combined Immunodeficiency (SCID) screening? Summaries of presentations are available online, with more information available here.  

August 18, 2015

Did You Know... that real-time queries are available on the NewSTEPs website to answer your questions about newborn screening programs? To learn more, click here.

August 3, 2015

Did You Know...  that Wisconsin is now requiring a Dried Blood Spot (DBS) screening card for every newborn, including refusals? This supports the goal of obtaining a reliable denominator for the calculation of Quality Indicators entered into the NewSTEPs Data Repository. To learn more, click here.

July 13, 2015

Did You Know...  APHL provides funding to support the full implementation of Severe Combined Immunodeficiency (SCID) newborn screening in 12 states and programs? As a technical assistance resource, APHL/NewSTEPs will be hosting an in-person SCID National Meeting in Bethesda, MD on July 30-31, 2015.  Additional information can be found linked here.

June 23, 2015

Did You Know...  that 29 newborn screening (NBS) laboratories are open on Saturdays and that 7 of those are open Saturdays and Sundays? This information, along with laboratory and follow-up operating hours, is provided on all NBS programs in the report linked here.

June 11, 2015

Did You Know...  that Colorado has improved the time elapsed from specimen collection to receipt, and that as of April 2015 they receive 68% of all samples within 2 days and 94% of samples within 4 days? Colorado is one of eight states participating in NewSTEPs Timeliness Collaborative Improvement and Innovation Network (CoIIN) to improve newborn screening timeliness.

May 13, 2015

Did You Know...  That 30 Newborn Screening (NBS) programs are screening for Severe Combined Immunodeficiency (SCID) accounting for 68% of all births in the United States? This information is provided for all 32 disorders listed on the Recommended Uniform Screening Panel (RUSP) in the attached report titled "Percent of National Births and Number of States Screening for All Disorders As of May 8, 2015".

April 30, 2015

Did You Know...  that NewSTEPs offers a non-regulatory customized site visit aimed at assessing all components of a newborn screening (NBS) program including the laboratory system, birth facilities, and follow-up system?

April 5, 2015

Did You Know... that NewSTEPs has amended Quality Indicator (QI) 5 in the NewSTEPs Data Repository to reflect the Advisory Committee for Heritable Disorders in Newborns and Children's (ACHDNC) revised recommendations for timeliness in newborn screening?

March 17, 2015

Did You Know... that quality indicator(QI) data for the years 2012, 2013, and 2014 can now be entered into the NewSTEPs Data Repository? You also have the option of uploading QI data directly into the repository using our newly available Quality Indicator data import tool.

March 10, 2015

Did You Know... that newborn screening for SCID is universally required by law or rule and fully implemented in 25 states? Another 7 states have laws or rules in place and are working towards full implementation. There are 11 state programs receiving support to further develop SCID NBS implementation through funding from APHL via a Cooperative Agreement from HRSA.  

February 26, 2015

Did You Know... that newborn screening for CCHD is universally required by law or rule and fully implemented in 36 states? Another 8 states have laws or rules in place and are working towards full implementation.