1. Expanding Newborn Screening Services for [STATE]
How Weekend/Holiday Courier and/or Laboratory Operations can Improve Timeliness in Newborn Screening

2. WHAT is Newborn Screening?

3. Newborn screening (NBS) is a public health intervention that tests newborns for critical disorders that may not show clinical symptoms at birth, but can cause permanent disability or death if not detected or treated in the first couple of days of life. According to the CDC, NBS is one of the greatest public health achievements in the 20th century.
In most cases, these tests require small samples of blood taken from the newborn’s heel within 1-2 days of birth and then the samples are shipped to the state laboratory where it is analyzed. The results are then reported to the child’s health care provider.
Each year, more than 12,000 babies with serious, but treatable conditions grow up healthy thanks to NBS
For more information, please see The Newborn Screening Story: How one Simple Test Changed Lives, Science and Health in America, found here:

4. WHY is Timeliness Important?
For more information about the importance of timeliness, including personal stories, watch the videos
Every Hour Counts, found here:
NewSTEPs 360 NBS Importance Video:

5. “Delays at hospitals across the country undermine newborn screening programs, putting babies at risk of disability and death”
In November 2013, the article, “Deadly Delays” in the Milwaukee Journal Sentinel found evidence of serious delays in newborn screening programs across the country due to laboratories being closed on weekends and holidays, a lack of hospitals using courier services to transport samples.
See the full article here:

6. ACHDNC Timeliness Recommendations
Presumptive positive results for time critical conditions should be communicated immediately to newborns healthcare provider, but no later than 5 days of life.
Presumptive positive results for all other conditions should be communicated as soon as possible, but no later than 7 days of life.
All NBS tests should be completed within 7 days of life with results reported to the healthcare provider as soon as possible.
Initial NBS specimens should be collected in the appropriate time frame for the newborn’s condition, but no later than 48 hours after birth.
Initial NBS specimens should be received at the laboratory as soon as possible; ideally within 24 hours of collection.
In 2015, the U.S. Department of Health and Human Services’ Advisory Committee on Heritable Disorders in Newborns and Children recommended timeliness goals for newborn screening programs and established a benchmark for states to achieve 95% of each goal. Goals include reporting all newborn screening results no later than 7 days after birth and presumptive positive results for time-critical conditions within five days. Initial samples should be collected no later than 48 hours after birth and should be received at the laboratory within one day for testing. See:
For more information about the ACHDNC Timelines Recommendations go here:

7. The NBS Process Model
NBS is a complex system that involves families, birthing facilities, midwives, laboratories, couriers, follow-up programs and healthcare providers where any delay in the NBS process may jeopardize the health and survival affected babies.
Children born on different days may have different outcomes. Using your own data, you may consider creating a diagram to show this.

8. How do Operating Hours Impact Ability to Meet ACHDNC Timeliness Recommendations?
Table 1: Association between Lab Weekend Hours and Achieving 95% Specimen Reporting within 7 Days of Birth in 2015
Closed Weekends
Open Saturday
Open Saturday & Sunday
P-value 0%
(n=0/10)
9.1 %
(n=1/11)
66.7%
(n=4/6)
0.004
States that have increased NBS laboratory operating hours are more likely to reach the 95% timeliness reporting goals. Expanding operating hours to the weekend permits laboratories to receive and process specimens on weekends, run assays, perform repeat screens to confirm out-of-range results and to call out critical results. States vary in terms of which of these activities they perform during weekend operating hours. However, each of these activities can ultimately reduce the time between specimen receipt and calling out of results.
These data represent a snapshot of current trends in the country, and do not imply a causal relationship. Expanding laboratory operating hours is one component of continuous quality improvement that can contribute to improvements throughout the system. While other factors did not reach statistical significance, improved outcomes in reporting are frequently paired with couriers providing seven day service and improved collection times resulting from educational activities that motivate nursing staff at birthing facilities to collect samples in a timely manner and to utilize provided courier services.
See NewSTEPs Timeliness Report to the Government Accountability Office for more information:
A higher proportion of NBS laboratories open seven days a week achieved the 95% of specimen reporting goal in 2015 compared to labs who were either open six or o five days

9. Current STATUS of NBS Operations

10. Laboratory Operating Days by State
This map was pulled from the NewSTEPs Data Repository on June 6, 2018 For an updated map of operating hours, go here:
10 programs have 7 day week lab operations, 24 have six day and 18 have five day week lab operations.
In [STATE], our laboratory operates X days a week from [INSERT HOURS OF OPERATIONS HERE]
The Association of Public Health Laboratories (APHL) recommends that NBS laboratories should not be closed more than two consecutive days and as you can see [STATE] is only open [INSERT WEEKEND STATUS HERE] and [INSERT HOLIDAY STATUS HERE].

11. Weekend Laboratory Activities Holiday Laboratory Activities
These tables was pulled from the NewSTEPs Data Repository on September 26, For an updated table of laboratory weekend/holiday status, go here:
Weekend and holiday laboratory activities vary by state—ranging from receiving specimens (ex: AZ, OK, MT), to testing time-critical disorders only, to testing all disorders, etc.
[STATE] currently performs [INSERT WEEKEND LAB TASKS HERE], but to better serve the babies in [STATE], especially those born on Thursday or Friday or on holidays, we need to [INSERT SUGGESTED ACTIVITIES HERE]

12. Follow-up Operating Days by State
This map was pulled from the NewSTEPs Data Repository on June 6, For an updated map of operating hours, go here:
13 states have follow-up services seven days a week and 12 programs have six day follow-up operations.
Most states have on-call weekend/holiday follow-up staff, who are able to access NBS results through remote technology.
[STATE] has X day follow-up services. In order to get urgent results to the necessary healthcare provider for quick intervention, we suggest [INSERT PLAN FOR HOW RESULTS WILL BE COMMUNICATED TO HEALTHCARE PROVIDERS HERE]

13. NBS Transit Time in US Received at NBS Lab within 2 Days of Collection
For an updated figure, use the NewSTEPs data infographics, found here: Login using your username and password and download the boxplot figure for quality indicator 5b.i.
This figure shows the national aggregate of specimens arriving at the lab within two days.
Within the past 5 years ( ), on average more specimens are getting to the lab faster!

14. NBS Transit Time in [STATE]: Received at NBS Lab within 2 Days of Collection
This is just a placeholder. To insert your state data, use the NewSTEPs data infographics, found here: Login using your username and password and download your state infographic for quality indicator 5b.i. On the right hand side, you can filter by your assigned NBS Program ID and select your timeframe and insert the median.
Median % of specimens arriving to the NBS Lab within two days of collection has steadily increased from As of [DATE], a median of X% of specimens arrive at the NBS lab within two days of collection.

15. 2017 NBS Transit Time Rank
This is just a placeholder. For an updated rankings, go to : Login using your username and password.
In 2017, [STATE] ranks [X] for transit time out of the programs that provided data
To improve the number of specimens reaching our lab faster, we suggest [INSERT PLAN FOR COURIER EXPANSION HERE]

16. Reporting Time-Critical Results in US Time Critical Results Reported within 5 days after birth
For an updated figure, use the NewSTEPs data infographics, found here: Login using your username and password and download the boxplot figure for quality indicator 5d.i.
This figure shows the national aggregate of time critical conditions reported out by 5 days of birth
There has not been much change percent of specimens with time critical conditions reported out by day 5.

17. Reporting Time Critical Results in [STATE]: Time Critical Results Reported within 5 days after birth
This is just a placeholder. To insert your state data, use the NewSTEPs data infographics, found here: Login using your username and password and download your state infographic for quality indicator 5d.i. On the right hand side, you can filter by your assigned NBS Program ID and select your timeframe and insert the median.
Currently, [STATE] is able to report out X% of time-critical results within 5 days of life. NOTE: Given that these disorders are rare, we recommend using quarterly instead of monthly data as this will be less skewed by small denominators.
It is nearly impossible to reach the 95% reporting goal for reporting time critical conditions by 5 days without extending NBS laboratory hours and courier.

18. 2016 Rank for Reporting Time-Critical Results within 5 Days after Birth
This is just a placeholder. For an updated rankings, go to : Login using your username and password.
In 2016, [STATE] ranks [X] for reporting out time critical disorders within 5 days of life
To improve reaching doctors and families sooner with these urgent results, we suggest [INSERT PLAN FOR EXPANDING SERVICES HERE]

19. Reporting ALL Results in US All Results Reported within 7 days after birth
For an updated figure, use the NewSTEPs data infographics, found here: Login using your username and password and download the boxplot figure for quality indicator 5d.iii.
This figure shows the national aggregate of all results reported out within 7 days of life
Nationally, all results are reported out faster in more recent years.

20. Reporting ALL Results in [STATE]: All Results Reported within 7 Days of Life
This is just a placeholder. To insert your state data, use the NewSTEPs data infographics, found here: Login using your username and password and download your state infographic for quality indicator 5d.iii. On the right hand side, you can filter by your assigned NBS Program ID and select your timeframe and insert the median.
Currently, [STATE] is able to report out X% of ALL results within 7 days of life.

21. 2016 Rank for Reporting ALL Results within 7 Days after Birth
This is just a placeholder. For an updated rankings, go to : Login using your username and password.
In 2016, [STATE] ranks [X] for reporting out all disorders within 7 days of life

22. IMPACT of Expanding Services in [STATE]
Once available, use Beth Tarini’s tool to model improved outcomes when increasing courier and/or laboratory operations to weekends/holidays. Please check back at
Also consider using ASTHO’s Return on Investment Tool which can be found here:

23. Predicted Improvements
How many expected babies will be identified with the expansion of laboratory and/or courier operations?
How will expansion lead to improvements in newborn screening timeliness?
Specimens received at NBS lab within two days of collection is expected to improve from X% to X% (change of X%) by [TIMEFRAME]
Reporting time critical results within 5 days of birth is expected to improve from X% to X% by [TIMEFRAME].
Reporting all NBS results within 7 days of birth is expected to improve from X% to X% by [TIMEFRAME].

24. Success Story
INSERT STORY HERE INSERT STORY HERENSERT STORY HERE INSERT STORY HEREINSERT STORY HERE INSERT STORY HERE INSERT STORY HERE INSERT STORY HERE INSERT STORY HERE INSERT STORY HERE INSERT STORY HERE INSERT STORY HERE INSERT STORY HERE INSERT STORY HERE INSERT STORY HERE INSERT STORY HERE INSERT STORY HERE INSERT STORY HERE INSERT STORY HERE INSERT STORY HERE INSERT STORY HERE INSERT STORY HERE INSERT STORY HERE
Insert your own family or newborn screening operating story or use other state experiences found from the case narratives provided in the Operating Hour Toolkit or in links below. If possible, insert real picture of child saved.

25. Plan for Implementation
This section is designed to show NBS stakeholders, leadership and policy makers HOW the NBS program plans to implement weekend/holiday laboratory and/or courier services. Sharing this information (even if very high level summary) provides a sense of reassurance to leaders that there is a well thought out plan for how change is going to happen.
See list of implementation considerations for NBS programs found in Section 7.

26. Staffing
How many staff will need to work on weekends/holidays to accommodate appropriate testing? Will any new staff need to be hired?
Data entry staff?
Union rules and concerns with scheduling changes
Scheduling on weekends/holidays (rotation, set shifts)?
Overtime? Compensatory Day? Flex Day?
Reallocate other NBS funds to support additional staffing?
Recruit from other laboratory sections?
Cross-training?
Follow-up staff? If none, what’s the plan for lab staff to communicate results on weekends/holidays?
See NewSTEPs State Profiles, Tables 1-5 in Section 6 and case stories to see other state’s staffing procedures on weekend and holidays

27. Equipment & Technical Support
Redundancy of equipment if one breaks down during non- traditional work week?
IT support (on-call? Plan if server goes down during non- traditional work hours?)
LIMs vendor support (add to contract?)
Equipment vendor support (add to contract?)
Ability for remote access
Many states have access to remote technology which allows programs to access and report NBS results from their cell phone. See the Minnesota and New Jersey case narratives where they discuss the benefits of using remote technology to support efficient weekend and holiday NBS operations (also helps with staff morale!)

28. Potential “Risks” & Solutions
Loss of experienced staff due to new expectation for weekend/holiday.
Decrease in staff morale
Scheduling burden for managers to ensure all days are appropriately staffed
Equipment malfunctions
Review the case narratives of other state’s experiences so you are aware of the potential barriers and ideas for solutions.

29. Funding to Expand NBS Services in [STATE]
Many policymakers want to know how much expanded laboratory and courier services will cost. This section provides a high level overview of the predicted cost and how much more money the NBS program will need to make these changes.

30. Predicted Costs for Weekend/Holiday NBS Operations
In total, to expand to X services, it will cost approximately $X per year.
$X for staffing
$X for weekend/holiday courier for X birthing facilities
$X weekend/holiday vendor support
$X weekend/holiday IT support
For help on NBS Fiscal Planning and Resource Allocation, go here:

31. How Can We Pay? Increase NBS fee from $X to $X per test/baby
Reallocate $X funds from…?
Legislation
See the Virginia, Missouri, and Utah case narratives to see how other programs payed for expanded services.

32. Together we can save baby’s lives!
INSERT FINAL MESSAGE HERE INSERT FINAL MESSAGE HERE
INSERT FINAL MESSAGE HERE
Provide final message and plan for expansion of newborn screening services here

33. Acknowledgements
Here list any partners, stakeholders, staff that have provided support to expand newborn screening services

34. References
Association of Public Health Laboratories (APHL); Colorado School of Public Health. Newborn Screening Technical assistance and Evaluation Program (NewSTEPs). Retrieved October 10, 2017 from
Association of Public Health Laboratories (APHL). The newborn screening story: how one simple test changed lives, science and health in America. Silver Spring, MD; Available at:
Health Resources and Services Administration. (2015). Timeliness of Newborn Screening: Recommendations from the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children. Retrieved October 10, 2017 from: mchbadvisory/heritabledisorders/ nbs_timeliness_goals.html
Ensign. K. What’s Your ROI? A Web-based Tool to Estimate Economic Returns on Investments for Public Health Agency Projects. Association of State and Territorial Health Officials. Retrieved October 13, 2017 from
Gabler, E. (2013). Deadly delays. Milwaukee Journal Sentinel, 16
Newborn Screening Technical assistance and Evaluation Program (NewSTEPs). (2016). NewSTEPs Timeliness Report. Final report to the US Government Accountability Office (GAO). Available at:
Wyoming Department of Health, Women and Infant Health Program & Colorado Department of Public Health and Environment, Newborn Screening Program (2016). Every Hour Counts: Timely collection and transport of newborn screening specimens. [Video/DVD] Denver, Colorado: West Edge Collective.
United States Government Accountability Office (GAO). (2016). Newborn screening timeliness: most states had not met screening goals, but some are developing strategies to address barriers. Report to Congressional Committees No. GAO