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Child's Nervous System
Published in: Child's Nervous System 2/2021

01-02-2021 | Dystonia | Original Article

The Child & Youth CompreHensIve Longitudinal Database for Deep Brain Stimulation (CHILD-DBS)

Authors: Han Yan, Lauren Siegel, Sara Breitbart, Carolina Gorodetsky, Hernan D. Gonorazky, Ivanna Yau, Cristina Go, Elizabeth Donner, Suneil K. Kalia, Alfonso Fasano, Alexander G. Weil, Aria Fallah, George M. Ibrahim

Published in: Child's Nervous System | Issue 2/2021

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Abstract

Purpose

Deep brain stimulation (DBS) is a common tool for the treatment of movement disorders in adults; however, it remains an emerging treatment modality in children with a growing number of indications, including epilepsy and dystonia. The Child & Youth CompreHensIve Longitudinal Database of DBS (CHILD-DBS) study aims to prospectively collect relevant data on quality of life (QoL), safety, efficacy, and long-term neurodevelopmental outcomes following DBS in children.

Methods

Data are collected and managed using the Research Electronic Data Capture (REDCap). This database aims to collect multicentre comprehensive and longitudinal clinical, QoL, imaging and electrophysiologic data for children under the age of 19 undergoing DBS.

Results

Both general and indication-specific measures are collected at baseline and at four time points postoperatively: 6 months, 1 year, 2 years, and 3 years. The database encompasses QoL metrics for children, including the PedsQL (Pediatric Quality of Life Inventory, generic), QOLCE (Quality of Life in Childhood Epilepsy Questionnaire, parent-rated), CHU 9D (Child Health Utility 9D), and KIDSCREEN. Caregiver clinical and QoL metrics, including QIDS (Quick Inventory of Depressive Symptomatology), GAD-7 (Generalized Anxiety Disorder 7-item scale), and CarerQoL-7D (The Care-related Quality of Life Instrument), are similarly prospectively collected. Healthcare resource utilization is also assessed before and after DBS. Lastly, stimulation parameters and radiographic and electrophysiologic data are collected within the database.

Conclusions

The development of the current prospective paediatric DBS database with carefully selected physical and psychosocial outcomes and assessments will complement existing efforts to enhance and facilitate multisite collaboration to further understand the role of DBS in childhood.
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Metadata
Title
The Child & Youth CompreHensIve Longitudinal Database for Deep Brain Stimulation (CHILD-DBS)
Authors
Han Yan
Lauren Siegel
Sara Breitbart
Carolina Gorodetsky
Hernan D. Gonorazky
Ivanna Yau
Cristina Go
Elizabeth Donner
Suneil K. Kalia
Alfonso Fasano
Alexander G. Weil
Aria Fallah
George M. Ibrahim
Publication date
01-02-2021
Publisher
Springer Berlin Heidelberg
Published in
Child's Nervous System / Issue 2/2021
Print ISSN: 0256-7040
Electronic ISSN: 1433-0350
DOI
https://doi.org/10.1007/s00381-020-04880-4

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