Defining the Minimal Long-Term Follow-Up Data Elements for Newborn Screening

Version 1 : Received: 27 February 2024 / Approved: 28 February 2024 / Online: 28 February 2024 (08:08:13 CET)
Version 2 : Received: 12 March 2024 / Approved: 12 March 2024 / Online: 12 March 2024 (08:14:19 CET)
Version 3 : Received: 22 April 2024 / Approved: 23 April 2024 / Online: 24 April 2024 (03:49:20 CEST)

How to cite: Kellar-Guenther, Y.; Barringer, L.; Raboin, K.; Nichols, G.; Chou, K.Y.; Nguyen, K.; Burke, A.R.; Fawbush, S.; Meyer, J.B.; Dorsey, M.; Brower, A.; Chan, K.; Lietsch, M.; Taylor, J.; Caggana, M.; Sontag, M.K. Defining the Minimal Long-Term Follow-Up Data Elements for Newborn Screening. Preprints 2024, 2024021612. https://doi.org/10.20944/preprints202402.1612.v3 Kellar-Guenther, Y.; Barringer, L.; Raboin, K.; Nichols, G.; Chou, K.Y.; Nguyen, K.; Burke, A.R.; Fawbush, S.; Meyer, J.B.; Dorsey, M.; Brower, A.; Chan, K.; Lietsch, M.; Taylor, J.; Caggana, M.; Sontag, M.K. Defining the Minimal Long-Term Follow-Up Data Elements for Newborn Screening. Preprints 2024, 2024021612. https://doi.org/10.20944/preprints202402.1612.v3

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MDPI and ACS Style

Kellar-Guenther, Y.; Barringer, L.; Raboin, K.; Nichols, G.; Chou, K.Y.; Nguyen, K.; Burke, A.R.; Fawbush, S.; Meyer, J.B.; Dorsey, M.; Brower, A.; Chan, K.; Lietsch, M.; Taylor, J.; Caggana, M.; Sontag, M.K. Defining the Minimal Long-Term Follow-Up Data Elements for Newborn Screening. Preprints 2024, 2024021612. https://doi.org/10.20944/preprints202402.1612.v3

APA Style

Kellar-Guenther, Y., Barringer, L., Raboin, K., Nichols, G., Chou, K.Y., Nguyen, K., Burke, A.R., Fawbush, S., Meyer, J.B., Dorsey, M., Brower, A., Chan, K., Lietsch, M., Taylor, J., Caggana, M., & Sontag, M.K. (2024). Defining the Minimal Long-Term Follow-Up Data Elements for Newborn Screening. Preprints. https://doi.org/10.20944/preprints202402.1612.v3

Chicago/Turabian Style

Kellar-Guenther, Y., Michele Caggana and Marci K. Sontag. 2024 "Defining the Minimal Long-Term Follow-Up Data Elements for Newborn Screening" Preprints. https://doi.org/10.20944/preprints202402.1612.v3

Abstract

Newborn screening (NBS) is hailed as a public health success, but little is known about long-term outcomes following a positive newborn screen. There has been difficulty gathering long-term follow-up (LTFU) data consistently, reliably, and with minimal effort. Six programs developed and tested a core set of minimal LTFU data elements. After an iterative data collection process and the development of a data collection tool, the group agreed on minimal LTFU data elements. The denominator captured all infants with an NBS diagnosis, accounting for children who moved or died prior to the follow-up year. They also agreed on three LTFU outcomes: if the child was still alive, had contact with a specialist, and received appropriate care specific to their diagnosis within the year. The six programs representing NBS public health programs, clinical providers, and research programs provided data across multiple NBS disorders. In 2022, 83.8% (563/672) of the children identified by the LTFU programs were alive and living in the jurisdiction; of those, 92.0% (518/563) saw a specialist, and 87.7% (494/563) received appropriate care. The core LTFU data elements can be applied as a foundation to address the impact of early diagnosis by NBS within and across jurisdictions.

Keywords

newborn screening; public health; equity; long-term follow-up data

Subject

Public Health and Healthcare, Public Health and Health Services

Copyright: This is an open access article distributed under the Creative Commons Attribution License which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

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