Caregiver assessment of quality of life in individuals with genetic developmental and epileptic encephalopathies

202231 citationsJournal Articlegreen Open Access

Authors

Stacey Cohen · Children's Hospital of Philadelphia

Ingo Helbig · Children's Hospital of Philadelphia

Michael C. Kaufman · Children's Hospital of Philadelphia

Leah Schust Myers · FamilieSCN2A Foundation

Laura Conway · University of Pennsylvania

Katherine L. Helbig · Children's Hospital of Philadelphia

Abstract

QoL in DEEs can be assessed through a standardized instrument. QoL only partially overlaps with objective measurements of disease severity and may represent an independent outcome measure in precision medicine trials.

Topics & Keywords

Genetics and Neurodevelopmental Disorders Genomics and Rare Diseases Epilepsy research and treatment

Publication Details

Published in: Developmental Medicine & Child Neurology

Volume 64, Issue 8, pp. 957-964

DOI: 10.1111/dmcn.15187

Field-Weighted Citation Impact: 5.24

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Caregiver assessment of quality of life in individuals with genetic developmental and epileptic encephalopathies

Authors

Abstract

Topics & Keywords

Publication Details