APHL Newborn Screening Systems Quality Improvement Projects Award Recipients Announced

Newborn screening laboratory scientist at work

The Association of Public Health Laboratories (APHL) is pleased to announce the recipients of the Newborn Screening Systems Quality Improvement Projects awards. Funded through a cooperative agreement with Genetic Services Branch of the US Health and Human Services Health Resources and Services Administration (HRSA), these awards will provide funding to support continuous quality improvement (CQI) initiatives led by state newborn screening programs.

The Newborn Screening Systems Quality Improvement Projects build on the combined success of previous HRSA Maternal and Child Health Bureau funded cooperative agreements for NewSTEPs, NewSTEPs 360 and the NewSTEPs Timeliness Collaborative Improvement and Innovation Network (CoIIN). However, the Newborn Screening Systems Quality Improvement Projects are unique in that agencies are able to identify specific system challenges within their programs and request the funding necessary to work through their challenges using CQI methods. The ultimate goal is to improve their state or territorial newborn screening program thus improving health outcomes for newborns.

A total of 14 project proposals from 12 agencies were selected to participate in the QI projects, with focus areas including newborn screening timeliness, improvements to long- and short- term follow-up, patient and provider education, health information technology (HIT) and improvements to results reporting. These agencies include:

  • Alaska Department of Health and Social Services
  • Colorado Department of Public Health and Environment
  • Georgia Department of Public Health Laboratory
  • Georgia Department of Public Health Laboratory
  • Heluna Health in partnership with the California Department of Health
  • Iowa Department of Public Health
  • Louisiana Office of Public Health Laboratories
  • Minnesota Department of Health
  • New York State Department of Health
  • Puerto Rico Newborn Screening Program
  • Puerto Rico Newborn Screening Program
  • South Carolina Department of Health and Environmental Control
  • Tennessee Department of Health
  • Virginia Department of General Services/Division of Consolidated Services

In addition to funding support, awardees of the Newborn Screening Systems Quality Improvement Projects participate in a multidisciplinary collaborative network focused on improving newborn screening. They will receive customized coaching and technical assistance on designing and implementing their quality improvement project; support around data and reporting; and opportunities to disseminate their projects to other members of the newborn screening community.

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This program is 100% funded through Cooperative Agreement # UG8MC31893 from the Health Resources and Services Administration. All publications and presentations are solely the responsibility of the authors and do not necessarily represent the official views of HRSA.

The Association of Public Health Laboratories (APHL) works to strengthen laboratory systems serving the public’s health in the US and globally. APHL’s member laboratories protect the public’s health by monitoring and detecting infectious and foodborne diseases, environmental contaminants, terrorist agents, genetic disorders in newborns and other diverse health threats.

 

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APHL Receives $7.5 Million Award to Strengthen Newborn Screening Systems

APHL Receives $7.5 Million Award to Strengthen Newborn Screening Systems | www.APHLblog.org

Congratulations to APHL’s Newborn Screening and Genetics team and the NewSTEPs team! Below is the official announcement of the award.

The Association of Public Health Laboratories (APHL) has been awarded a five-year cooperative agreement of up to $7.5 million by the Genetic Services Branch of the US Health and Human Services Health Resources and Services Administration (HRSA) to maintain and manage the Newborn Screening Technical assistance and Evaluation Program (NewSTEPs). A component of the APHL Newborn Screening and Genetics Program, NewSTEPs provides quality improvement initiatives to strengthen newborn screening systems, a data repository, technical assistance and resources to state newborn screening programs and stakeholders.

“We are honored to receive this award,” said Jelili Ojodu, director of APHL’s Newborn Screening and Genetics Program and director of NewSTEPs. “This funding will allow us to continue provide states with robust and comprehensive tools that will allow them to improve the efficiency of the services they provide to newborn babies.”

Named one of the ten greatest public health achievements of the 20th century, newborn screening saves or improves the lives of more than 12,000 babies annually in the US. For babies who test positive for one of the genetic, metabolic, heart or hearing conditions, newborn screening can prevent serious health problems or even death.

NewSTEPs helps facilitate newborn screening initiatives and improve programmatic outcomes to enhance the quality of the newborn screening system through data driven quality improvements.

 

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This project is 100% supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) as part of an award totaling $1,500,000. The contents are those of the author(s) and do not necessarily represent the official views of, nor endorsement, by HRSA, HHS or the U.S. Government.

The Association of Public Health Laboratories (APHL) works to strengthen laboratory systems serving the public’s health in the US and globally. APHL’s member laboratories protect the public’s health by monitoring and detecting infectious and foodborne diseases, environmental contaminants, terrorist agents, genetic disorders in newborns and other diverse health threats.

The post APHL Receives $7.5 Million Award to Strengthen Newborn Screening Systems appeared first on APHL Lab Blog.

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