NewSTEPs

From Clinfowiki
Jump to: navigation, search

NewSTEPs (The Newborn Screening Technical assistance and Evaluation Program) is an informatics project by the Association of Public Health Laboratories (APHL) for newborn screening programs that offers a data repository as well as continuous quality improvement resources. Monthly data is sent by state and partnered newborn screening programs in various categories, including testing and specimen collection metrics as well as metrics on confirmed cases of screened conditions discovered through newborn screening testing.

Newborn screening programs and partners are only asked to report metrics they are able to provide. Some statistics are considered priority metrics that laboratories are most likely to track, such as unsatisfactory specimens, time from birth to reporting,


Introduction

NewSTEPs was created in 2015 as a collaboration between APHL and the Colorado School of Public Health and included project partnerships with several other advocacy groups and funding from the Health Resources and Services Administration of the U.S. Department of Health and Human Services (HHS). [1] An introductory cohort of 20 state and territorial NBS programs with varying quality improvement initiatives were selected in 2015[2] and 8 more programs joined in 2016.[3]


Background

Newborn Screening

State-mandated newborn screening programs began in 1963 in Massachusetts, Delaware, Vermont, and Oregon adopted Robert Guthrie’s bacterial assay for detection of phenylketonuria (PKU) [4]. Modern newborn screening encompasses screenings for hearing, critical congenital heart disease (CCHD), and dried blood spot testing for metabolic and genetic disorders. Modern dried blood spot screening utilizes several different techniques including PCR, fluorescent immunoassay, tandem mass spectroscopy and more recently, genetic sequencing.


Recommended Uniform Screening Panel (RUSP)

The testing panel offered varies between states, but the need for uniformity across programs has been recognized. [5] The U.S. Secretary of Health and Human Services’ Advisory Committee on Heritable Disorders in Newborns and Children convenes annually to review recommendations for addition to the Recommended Uniform Screening Panel, considered the core panel for laboratory newborn screening. As of 2022, the RUSP lists 37 core disorders and 26 secondary disorders suggested for inclusion in states’ newborn screening panels. NewSTEPs compiles information about state and partner programs and panels into state profiles and reports regarding program operations.


Metrics

The need for standardized data to compare quality across many different programs lead to the creation of a panel that has been refined over time.[6] Data is collected for a harmonized panel of eight Quality Indicator categories: unsatisfactory specimens, missing essential information, unscreened newborns, cases lost to follow up, timeliness, positive screenings, confirmed positive screenings, and missed cases. All eight categories have sub-categories consisting of a varying number of individual metrics. NewSTEPs de-identifies and aggregates data reported by states to provide data visualizations for public viewing as well as visualizations only available to member programs.

Nineteen disorders detected by newborn screening are designated as time-critical, [7] meaning faster turnaround time for results improve outcomes for affected newborns. Because of the critical nature of the testing, timeliness is tracked across many of the Quality Indicators collected, including time from birth to first specimen collection at the birthing center, time from collection to receipt in the laboratory, time from receipt to reporting, and time from birth to reporting of results. Other metrics include information regarding specimens received that are unsatisfactory for testing due to specimen quality or lack of identifying information. [8]

53 programs were contributing data to NewSTEPs as of 2021 [6]. The program also facilitates coordination and information sharing across states through workgroups, information sessions at the National Newborn Screening Symposium, and the creation of the NewSTEPs Short-Term Follow-Up National Meeting.


Issues

The metrics provided are voluntary and vary between states. Barriers to the collection of information include the time needed to collect and enter the data to submit and limitations to data collected. Due to varying time and ability to submit data, it is difficult to know how significant trends are until additional states have also entered data. [6] Diagnostic information is commonly reported back to NBS programs manually, so diagnostic information is usually delayed or insufficient. For this reason, case counts are more likely to be reported than detailed data about individual cases. [9]

Impact

A survey performed after the 2018 NewSTEPs Short-Term Follow-Up meeting found that 94% of participants felt that they would use what they had learned in their work and 81% felt that the meeting had help them find solutions to problems within their program. Peer-to-peer networking and collaboration was the most common reported benefit of the meetings. [6] A study comparing the reported data of 25 states between 2016-2018 found that the average percentage of specimens collected within 48 hours (the ideal for first specimen collection) rose from 95% to 97%. Time-critical result reporting within 5 days of life rose from 49% to 64% [3]


Usability in Studies

A study published in 2022 looking at data from 2006-2020 within the NewSTEPs repository found that 37.8% of cases reported were missing information about the race and/or ethnicity of the affected baby and 31.7% were missing information about the newborn's gestational age. However, the same study found information about sex and birthweight was fairly complete, with only 3.8% and 7.0% missing, respectively. Highlighting the importance of complete data, the analysis found novel associations for Mucopolysaccharidosis I (MPS I) in black babies and Maple Syrup Urine Disease (MSUD) in Hispanic babies of any race.[10]


References

  1. ↑ "APHL's Scott Becker Explains How NewSTEPs 360 Is Promoting Innovation in Newborn Screening". The Association of State and Territorial Health Officials. Retrieved 22 Apr 2023.
  2. ↑ "20 States Selected for National Collaborative to Improve Newborn Screening Programs" (17 February 2006). National Institute for Children's Health Quality. Retrieved 26 Apr 2023.
  3. ↑ 3.0 3.1 Sontag MK, Miller JI, McKasson S, Sheller R, Edelman S, Yusuf C, Singh S, Sarkar D, Bocchini J, Scott J, Ojodu J, Kellar-Guenther Y. "Newborn screening timeliness quality improvement initiative: Impact of national recommendations and data repository". PLoS One. 2020 Apr 2;15(4):e0231050. doi: 10.1371/journal.pone.0231050. PMID: 32240266; PMCID: PMC7117765. Retrieved 26 Apr 2023.
  4. ↑ Caggana M, Jones EA, Shahied SI, Tanksley S, Hermerath CA, Lubin IM. Newborn screening: from Guthrie to whole genome sequencing. Public Health Rep. 2013 Sep-Oct;128 Suppl 2(Suppl 2):14-9.
  5. ↑ "Newborn screening: toward a uniform screening panel and system". Genet Med. 2006 May;8 Suppl 1(Suppl 1):1S-252S.
  6. ↑ 6.0 6.1 6.2 6.3 Darby E, Thompson J, Johnson C, Singh S, Ojodu J. "Establishing a National Community of Practice for Newborn Screening Follow-Up". Int J Neonatal Screen. 2021 Jul 26;7(3):49. doi: 10.3390/ijns7030049. Retrieved 26 Apr 2023.
  7. ↑ "Time Critical Disorders". Association of Public Health Laboratories (APHL. Retrieved 23 Apr 2023.
  8. ↑ [NewSTEPs Newborn Screening Quality Indicators https://www.newsteps.org/media/26/download?inline]. (2023). The Association of Public Health Laboratories. Retrieved 22 Apr 2023.
  9. ↑ Gaviglio, A.; McKasson, S.; Singh, S.; Ojodu, J. "Infants with Congenital Diseases Identified through Newborn Screening—United States, 2018–2020". Int. J. Neonatal Screen. 2023, 9, 23. https://doi.org/10.3390/ijns9020023 Retrieved 26 Apr 2023.
  10. ↑ Omari A, Reeves SL, Prosser LA, Creary MS, Ahmad A, Chua KP. [Usability of NewSTEPs Data for Assessing the Characteristics of Infants with Newborn Screening Disorders https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9326755/]. Int J Neonatal Screen. 2022 Jul 19;8(3):42. Retrieved 23 Apr 2023
Retrieved from "http://www.clinfowiki.org/wiki/index.php?title=NewSTEPs&oldid=33450"