Understanding the patient experience of Classic Galactosemia in pediatric and adult patients: increased disease burden, challenges with daily living, and how they evolve over time

Understanding the patient experience of Classic Galactosemia in pediatric and adult patients: increased disease burden, challenges with daily living, and how they evolve over time

Abstract Background Classic Galactosemia (CG) is a rare, autosomal recessive condition. Newborn screening and a timely galactose-restricted diet can resolve acute symptoms and decrease fatalities, but significant chronic, progressive morbidities remain and significantly impact daily life. The object...

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Bibliographic Details
Main Authors: Jason A. Randall, Carolyn Sutter, Lydia Raither, Stella Wang, Evan Bailey, Riccardo Perfetti, Shoshana Shendelman, Claire Burbridge
Format: Article
Language:English
Published: SpringerOpen 2023-09-01
Series:Journal of Patient-Reported Outcomes
Subjects:
Classic Galactosemia
Quality of life
Qualitative
Survey
Interviews
Patient
Online Access:https://doi.org/10.1186/s41687-023-00635-2

Internet

https://doi.org/10.1186/s41687-023-00635-2

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