Q&A with NewSTEPs: Bringing routine CCHD newborn screening to every state

The latest release of CDC’s Morbidity and Mortality Weekly Report (MMWR) highlights the rapidly expanding program to routinely test all newborns for critical congenital heart disease (CCHD). In September 2011, CCHD was added to the HHS secretary’s Recommended Uniform Screening Panel (RUSP) for all newborns in the United States. Currently, the vast majority of states require CCHD screening for newborns while others have policies in the pipeline.

Read how this simple test saved Baby Dylan’s life

As noted in the MMWR, in 2014 CDC began partnering with the Newborn Screening Technical assistance and Evaluation Program (NewSTEPs), a program of APHL in collaboration with the Colorado School of Public Health. NewSTEPs is a national newborn screening program designed to provide data, technical assistance and training to state newborn screening programs across the country.

Sikha Singh, manager of NewSTEPs (APHL), and Marci Sontag, associate director of NewSTEPs (Colorado School of Public Health), answered some questions about bringing routine CCHD screening to all 50 states.

A primary role for NewSTEPs in the success of the CCHD newborn screening program has been data collection. Why is data collection a key contributor to this program’s success?

As with all newborn screening, it is important to have continuous quality assurance programs for CCHD screening. Data shows us what is working and where improvements can be made. At the public health level (as opposed to clinical care), we are always asking these questions:

– How many newborns were screened?
– Were there any newborns who were not screened but should have been?
– How many newborns had abnormal screening results and what happened to them?
– Did the newborns who had abnormal results receive the appropriate follow-up and care?
– Is the testing algorithm being appropriately implemented?
– Can changes be made to the algorithm to decrease inaccurate results?

CCHD newborn screening is done right in the hospital with a pulse-oximeter that is placed on the baby’s foot. No sample is sent to a public health laboratory like with other newborn screening tests. So why is APHL involved in this aspect of the newborn screening program?

Q&A with NewSTEPs: Bringing routine CCHD newborn screening to every state | www.APHLblog.orgAPHL and NewSTEPs are a newborn screening resource, so we are responsible for supporting that system. CCHD screening is one of two point-of-care newborn screening tests that are not laboratory- based (hearing loss detection is the other.) In many cases, newborn screening program staff are covering all aspects of the state’s newborn screening program. If our members and partners are focused on the entire system, we need to be as well.

Why was the addition of CCHD testing so significant for the newborn screening program?

Addressing CCHD screenings is very different from other newborn screens because abnormal results mean a baby requires immediate follow-up care prior to leaving the hospital. Abnormal results would indicate a dire situation and, in many cases, the solution is open heart surgery. CCHD screening therefore sets off a completely different chain of events than other newborn screens.

From the direct perspective of NewSTEPs, the exchange of information is different. With laboratory- based newborn screening, data is typically sent from the state public health laboratories to birthing facilities. With CCHD, we are working to get data from birthing facilities to newborn screening programs, which poses significant financial and logistical challenges.

More broadly speaking, the addition of CCHD to newborn screening panels has expanded public health’s commitment to addressing severe conditions in the very early stages of life before permanent damage can be done. While newborn screening once referred only to metabolic conditions, it now includes many other types of heritable diseases as well. The addition of both CCHD and hearing loss detection brought newborn screening into completely new territories but under the same goal of saving and improving babies’ lives.

What needs to happen to have all 50 states routinely screening every newborn for CCHD?

As the MMWR indicates, we are very close to having all states routinely screening for CCHD. In fact, additional states have begun mandatory CCHD screenings since the MMWR was written. NewSTEPs works closely with each state to evaluate the best mechanism for moving routine CCHD screening forward. In some states, legislative action has been necessary to move CCHD screening forward, but other states have mandated screening through regulatory action, and yet other states have implemented statewide screening absent a legislative or regulatory mandate. Through our ongoing data collection and analysis, along with the help of partner organizations and parent advocates, we have the tools and the momentum necessary to ensure that CCHD newborn screening becomes the standard of care in all states.

Learn more about NewSTEPs

APHL’s Top 10 Blog Posts of 2014

Wow, this has been quite a year for public health. Vaccine preventable disease outbreaks, MERS-CoV, chikungunya, EV-D68, and Ebola on top of the usual critical food safety, environmental health, preparedness and global health work being done by our members tested every system across the board. While I feel it is safe to say that no one wanted to face these issues for a multitude of reasons, we were beyond pleased to see public health laboratories face and respond to the many challenges of the year. As we hear from our members often, “It’s all in a day’s work.”

These are the blog posts that brought in the highest number of readers this year. Thank you to the APHL staff and members who wrote and contributed to these stories; and thank you to the many readers who keep coming back.

APHL's Top 10 Blog Posts of 2014 | www.aphlblog.org10. Safe Drinking Water Act has Been Protecting You for 40 Years – This year was the 40th anniversary of the Safe Drinking Water Act, the first national standard for public drinking water protections. Raise a glass of clean water with us! Cheers!

9. Where are They Now? APHL/CDC Emerging Infectious Disease Fellow Looks Back – Kayleigh Jennings, a former APHL/CDC Emerging Infectious Disease Fellow, shares some of the highlights of her fellowship experience. “I never would have had any of these life-changing experiences if not for this fellowship.”

8. MERS-CoV: Why We Are Not Panicking – Following the confirmation of two MERS-CoV cases in the US, the public began to worry that the outbreak could spread here. Some of APHL’s Infectious Disease program staff and Public Health Preparedness and Response program staff explained why they weren’t panicking. As they say in this blog post, “…We in the public health system are poised to handle MERS-CoV and other health threats whenever, wherever and however they enter our country.”

7. Could funding cuts to food safety programs make you sick? – We followed the journey of a hypothetical batch of peanuts from farm to table, so to speak. Along the way our peanuts became contaminated with Salmonella. But as funding cuts have deeply impacted food safety programs, would the contamination be detected early enough to prevent an outbreak? Or at least to stop an outbreak from spreading further?

6. USAMRIID: Biodefense from the Cold War to Present Day – Our Public Health Preparedness and Response program staff visited the US Army Medical Research Institute of Infectious Diseases (USAMRIID) and shared some of what they learned about its history and the fascinating work done in their laboratories. At the time, we didn’t know that USAMRIID would be thrown into the public eye as the Ebola story unfolded.

5. Dylan Coleman Has a Story to Warm Your Heart – Thanks to newborn screening, Dylan Coleman had a simple non-invasive test that detected critical congenital heart disease (CCHD). Without this test, Dylan may not have survived. He was the first baby born in Maryland to be diagnosed with a heart defect as a result of this newly added test.

4. In US, Massive Effort to Detect and Respond to Ebola Already Underway – Just a few weeks before the first Ebola case was identified in the US, this blog post outlined how public health laboratories were preparing just in case. By the end of the month we all learned that this preparedness effort would be tested and ultimately shown to be successful.

3. Food Safety Funding Cuts in Action – Two days after our blog post on food safety funding cuts (see #7 above) went live, it became obvious that our hypothetical situation was playing out in real life with a stone-fruit recall. Testing performed in Australia found Listeria on stone fruit distributed from a company in California. A similar program in the US was cut from the budget on December 31, 2012; had this program still been in place, the contaminated fruit may have been identified and intercepted long before arriving in Australia.

2. Enterovirus D68 Testing, Surveillance and Prevention: What We’re Telling Our Friends – As there were more and more reports of Enterovirus D68 infections in kids, parents started to worry. APHL’s Infectious Disease program staff tried to address concerns and assure people that the clinical and public health communities could handle this outbreak.

The most read blog post for 2014…

1. Testing for MERS-CoV: The Indiana Lab’s Story – The staff at the Indiana State Department of Health Laboratories were kind enough to write about their encounter with MERS-CoV. They were the first laboratory in the US to have a positive MERS case. Thanks to effective preparedness efforts and highly qualified staff, they were able to quickly and safely obtain accurate results. This is public health!