Diagnostic experiences of Duchenne families and their preferences for newborn screening: A mixed‐methods study
Author:
Affiliation:
1. Department of Biomedical Informatics The Ohio State University College of Medicine Columbus Ohio USA
2. Parent Project Muscular Dystrophy Washington District of Columbia USA
Funder
Parent Project Muscular Dystrophy
Publisher
Wiley
Subject
Genetics (clinical),Genetics
Link
https://onlinelibrary.wiley.com/doi/pdf/10.1002/ajmg.c.31992
Reference49 articles.
1. Preparing newborn screening for the future: a collaborative stakeholder engagement exploring challenges and opportunities to modernizing the newborn screening system
2. Parental Attitudes Toward Standard Newborn Screening and Newborn Genomic Sequencing: Findings From the BabySeq Study
3. Expert Evaluation of Strategies to Modernize Newborn Screening in the United States
4. Newborn screening of duchenne muscular dystrophy specifically targeting deletions amenable to exon-skipping therapy
5. Parental Reflections on the Diagnostic Process for Duchenne Muscular Dystrophy: A Qualitative Study
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1. Barriers to diverse clinical trial participation in Duchenne muscular dystrophy: Engaging Hispanic/Latina caregivers and health professionals;Orphanet Journal of Rare Diseases;2024-05-21
2. Assessing the Benefits and Harms Associated with Early Diagnosis from the Perspective of Parents with Multiple Children Diagnosed with Duchenne Muscular Dystrophy;International Journal of Neonatal Screening;2024-04-15
3. Newborn screening for Duchenne muscular dystrophy: the perspectives of stakeholders;The Lancet Regional Health - Western Pacific;2024-04
4. Detecting early signs in Duchenne muscular dystrophy: comprehensive review and diagnostic implications;Frontiers in Pediatrics;2023-11-10
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