NewSTEPs: The Establishment of a National Newborn Screening Technical Assistance Resource Center

Ojodu, Jelili; Singh, Sikha; Kellar‐Guenther, Yvonne; Yusuf, Careema; Jones, Elizabeth; Wood, Tyler; Baker, Mei W.; Sontag, Marci K.

doi:10.3390/ijns4010001

Cited by 25 publications

(23 citation statements)

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“…NewSTEPs [ 4 ], a program of the Association of Public Health Laboratories (APHL), is the national NBS resource center designed to provide data, technical assistance and training to US NBS programs and assist them with quality improvement initiatives. It functions with the goal of improving outcomes for newborns by facilitating NBS initiatives and programmatic outcomes, including the offering of expertise in NBS program development and evaluation, member connection and data analysis to improve the overall quality of the NBS system [ 5 ]. Aligning with this goal, NewSTEPs maintains a centralized and secure data repository that is designed to collect comprehensive data on NBS programs.…”

Section: Methodsmentioning

confidence: 99%

Landscape of Congenital Adrenal Hyperplasia Newborn Screening in the United States

Edelman

Desai

Pigg

et al. 2020

IJNS

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Newborn screening (NBS) is a state-based public health program that aims to identify newborns at risk of certain disorders in the first days after birth to prevent permanent disability or death. Disorders on the Health and Human Services Federal Advisory Committee’s Recommended Uniform Screening Panel (RUSP) have been adopted by most state NBS programs; however, each state mandates specific disorders to be screened and implements their own system processes. Congenital adrenal hyperplasia (CAH) was added to the RUSP in 2005, and currently all 53 NBS programs universally screen for it. This paper provides a landscape of CAH screening in the United States, utilizing data voluntarily entered by state NBS programs in the Newborn Screening Technical assistance and Evaluation Program data repository. Data reported encompasses NBS state profile data (follow-up, disorder testing and the reporting of processes and methodologies for screening), quality indicator data (timeliness of CAH NBS) and confirmed cases. This comprehensive landscape analysis compares the CAH NBS systems across the US. This is vital in ultimately ensuring that newborns with CAH at risk of salt crisis receive appropriate intervention in a timely manner.

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Section: Methodsmentioning

confidence: 99%

Landscape of Congenital Adrenal Hyperplasia Newborn Screening in the United States

Edelman

Desai

Pigg

et al. 2020

IJNS

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“…Under NewSTEPs 360, NBS programs were convened to identify and overcome barriers to timely NBS through technical and financial assistance. NewSTEPs 360 was built upon the foundation of the HRSA-funded Newborn Screening Technical assistance and Evaluation Program (NewSTEPs) [8], which included access to the NewSTEPs Data Repository.…”

Section: • Presumptive Positive Results For All Other Conditions Shoumentioning

confidence: 99%

Newborn screening timeliness quality improvement initiative: Impact of national recommendations and data repository

et al. 2020

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BackgroundNewborn screening (NBS) aims to achieve early identification and treatment of affected infants prior to onset of symptoms. The timely completion of each step (i.e., specimen collection, transport, testing, result reporting), is critical for early diagnosis. Goals developed by the Secretary of Health and Human Services' Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) for NBS timeliness were adopted (time-critical results reported by five days of life, and non-time-critical results reported by day seven), and implemented into a multi-year quality improvement initiative (NewSTEPS 360) aimed to decrease the time to result reporting and intervention. MethodsThe NBS system from specimen collection through reporting of results was assessed (bloodspot specimen collection, specimen shipping, sample testing, and result reporting). Annual data from 25 participating NBS programs were analyzed; the medians (and interquartile range, IQR) of state-specific percent of specimens that met the goal are presented. ResultsThe percent of specimens collected before 48 hours of life increased from 95% (88-97%) in 2016 to 97% (IQR 92-98%) in 2018 for the 25 states, with 20 (80%) of programs collecting more than 90% of the specimens within 48 hours of birth. Approximately 41% (IQR 29-57%) of specimens were transported within one day of collection. Time-critical result reporting in the first five days of life improved from 49% (IQR 26-74%) in 2016 to 64% (42%-71%) PLOS ONEPLOS ONE | https://doi.

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“…The Newborn Screening Technical assistance and Evaluation Program (NewSTEPs) is a HRSA-funded initiative with the goal of facilitating NBS related technical assistance and data collection throughout the United States [ 11 ]. This project is a continuation of efforts that were previously undertaken by the National Newborn Screening and Genetics Resource Center [ 32 ].…”

Section: Resultsmentioning

confidence: 99%

“…This project is a continuation of efforts that were previously undertaken by the National Newborn Screening and Genetics Resource Center [ 32 ]. The case definitions developed by the expert workgroups, under the leadership of HRSA, are now integrated into the NewSTEPs data repository [ 11 ]. State NBS programs must have a Memorandum of Understanding with the Association of Public Health Laboratories (APHL) before individual case data can be entered to ensure that data privacy and data security requirements are maintained.…”

Section: Resultsmentioning

confidence: 99%

“…The RUSP has expanded to 34 conditions as of February 2016. Two of the conditions on the RUSP, critical congenital heart defects and hearing loss, are screened in the nursery and referred to as “point-of-care” NBS, while the remaining conditions are screened using DBS at a central laboratory within a state or region [ 11 ]. Currently, all states require screening for at least 26 of the 34 recommended conditions, and standards for laboratory practices have been developed [ 12 ].…”

Section: Introductionmentioning

confidence: 99%

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Case Definitions for Conditions Identified by Newborn Screening Public Health Surveillance

Sontag

Sarkar

Comeau

et al. 2018

IJNS

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Newborn screening (NBS) identifies infants with rare conditions to prevent death or the onset of irreversible morbidities. Conditions on the Health and Human Services Secretary’s Recommended Uniform Screening Panel have been adopted by most state NBS programs, providing a consistent approach for identification of affected newborns across the United States. Screen-positive newborns are identified and referred for confirmatory diagnosis and follow-up. The designation of a clinically significant phenotype precursor to a clinical diagnosis may vary between clinical specialists, resulting in diagnostic variation. Determination of disease burden and birth prevalence of the screened conditions by public health tracking is made challenging by these variations. This report describes the development of a core group of new case definitions, along with implications, plans for their use, and links to the definitions that were developed by panels of clinical experts. These definitions have been developed through an iterative process and are piloted in NBS programs. Consensus public health surveillance case definitions for newborn screened disorders will allow for consistent categorization and tracking of short- and long-term follow-up of identified newborns at the local, regional, and national levels.

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NewSTEPs: The Establishment of a National Newborn Screening Technical Assistance Resource Center

Cited by 25 publications

References 2 publications

Landscape of Congenital Adrenal Hyperplasia Newborn Screening in the United States

Landscape of Congenital Adrenal Hyperplasia Newborn Screening in the United States

Newborn screening timeliness quality improvement initiative: Impact of national recommendations and data repository

Case Definitions for Conditions Identified by Newborn Screening Public Health Surveillance

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