Perceptions and Experiences of Families of Infants Diagnosed with X-Linked Adrenoleukodystrophy (X-ALD) via Newborn Screening in Georgia and Kentucky
Introduction: Newborn screening (NBS) for X-linked adrenoleukodystrophy (X-ALD) was added to the Recommended Uniform Screening Panel (RUSP) in 2016 to enable early diagnosis and treatment. This study aimed to understand the experiences of parents/caregivers of children with X-ALD to improve the NBS...
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| Main Authors: | , , , |
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| Format: | Article |
| Language: | English |
| Published: |
SAGE Publishing
2025-06-01
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| Series: | Journal of Primary Care & Community Health |
| Online Access: | https://doi.org/10.1177/21501319251337182 |
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