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

Area of Science:

• Pediatric Neurology
• Neurosurgery
• Quality of Life Research

Background:

• Deep brain stimulation (DBS) is established for adult movement disorders but is an emerging treatment for pediatric conditions like epilepsy and dystonia.
• Longitudinal data on pediatric DBS outcomes are limited, hindering comprehensive understanding and treatment optimization.

Purpose of the Study:

• To establish the Child & Youth CompreHensIve Longitudinal Database of DBS (CHILD-DBS) for prospective data collection.
• To evaluate quality of life (QoL), safety, efficacy, and neurodevelopmental outcomes in pediatric patients undergoing DBS.

Main Methods:

• Utilizing Research Electronic Data Capture (REDCap) for multicenter, comprehensive data collection.
• Collecting clinical, QoL, imaging, and electrophysiologic data from pediatric patients (<19 years) undergoing DBS.
• Assessing outcomes at baseline and at 6 months, 1, 2, and 3 years post-surgery.

Main Results:

• The database includes validated QoL measures for children (PedsQL, QOLCE, CHU 9D, KIDSCREEN) and caregivers (QIDS, GAD-7, CarerQoL-7D).
• Healthcare resource utilization, stimulation parameters, and radiographic/electrophysiologic data are also prospectively collected.
• Data collection spans general and indication-specific measures at multiple postoperative time points.

Conclusions:

• The CHILD-DBS database provides a robust framework for multisite collaboration in pediatric DBS research.
• This initiative will enhance understanding of DBS's role in childhood neurological conditions.
• Carefully selected physical and psychosocial outcomes are crucial for advancing pediatric DBS knowledge.