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...

Full description

Saved in:
Bibliographic Details
Main Authors: Sharanya Iyer, Aileen Kenneson, Nadia Ali, Gwen Gunn
Format: Article
Language:English
Published: SAGE Publishing 2025-06-01
Series:Journal of Primary Care & Community Health
Online Access:https://doi.org/10.1177/21501319251337182
Tags: Add Tag
No Tags, Be the first to tag this record!