Parental psychosocial outcomes after a positive newborn screen for a lysosomal storage disorder

This mixed-methods study provides evidence that NBS for LSDs may be associated with extended psychosocial impacts for some families, even if their child does not have an LSD. Lower false positive rates and additional counseling may limit the burden.

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Publication Details

Journal
Molecular Genetics and Metabolism
Published
2025-09-23
DOI
https://doi.org/10.1016/j.ymgme.2025.109235
Primary Topic
Family and Disability Support Research
Type
article
Field-Weighted Citation Impact
0.00
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article

Parental psychosocial outcomes after a positive newborn screen for a lysosomal storage disorder

Randi Gadea, Courtney Berrios, Janelle Noel‐MacDonnell, Meghan E. Strenk et al.
Molecular Genetics and Metabolism
Family and Disability Support Research
article

Parental psychosocial outcomes after a positive newborn screen for a lysosomal storage disorder

Randi Gadea, Courtney Berrios, Janelle Noel‐MacDonnell, Meghan E. Strenk, Jennifer Gannon, Twisha Nadella
article en

Abstract

This mixed-methods study provides evidence that NBS for LSDs may be associated with extended psychosocial impacts for some families, even if their child does not have an LSD. Lower false positive rates and additional counseling may limit the burden.

Molecular Genetics and MetabolismVol. 146(3)
Children's Mercy Hospital (US), Mercy Research (US), University of Missouri–Kansas City (US)
Openalex Percentile: Top 64%
Family and Disability Support Research
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Parental psychosocial outcomes after a positive newborn screen for a lysosomal storage disorder — Randi Gadea, Courtney Berrios, et al. · Molecular Genetics and Metabolism (2025) | TGRS Research Map | TGRS