Person-centered outcomes for liver glycogen storage diseases: Development of an international consensus-based standard outcome set

20250 citationsJournal Articlehybrid Open Access

Authors

Ruben J. Overduin · University Medical Center Groningen

Andrea B. Schreuder · University Medical Center Groningen

F.K. Withaar · University Medical Center Groningen

Sarah C. Grünert · University Medical Center Freiburg

Jamas LaFreniere · Hope Foundation

Enrique Contreras · St. Andrews University

Gayle W Temkin

Abstract

An international consensus-based standard set of person-centered health outcomes for liver GSD was developed to apply in health care, registries, and clinical trials.

Topics & Keywords

Glycogen Storage Diseases and Myoclonus Genetics and Neurodevelopmental Disorders Carbohydrate Chemistry and Synthesis

Publication Details

Published in: Genetics in Medicine

Volume 27, Issue 12, pp. 101589-101589

DOI: 10.1016/j.gim.2025.101589

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Person-centered outcomes for liver glycogen storage diseases: Development of an international consensus-based standard outcome set

Authors

Abstract

Topics & Keywords

Publication Details