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CHILD-DBS

Child & Youth Comprehensive Longitudinal Database for Deep Brain Stimulation

Key Points about CHILD-DBS

It is a prospective clinical registry, meaning it systematically collects data going forward in time from pediatric patients undergoing deep brain stimulation (DBS).

Focuses specifically on children and adolescents receiving DBS for conditions like drug-resistant epilepsy (DRE).

Tracks not only traditional clinical outcomes (like seizure frequency and severity) but also patient-centered and functional outcomes, such as:

Quality of life

School attendance

Caregiver reports

Allows for longitudinal analysis, capturing how these outcomes evolve over time — in this study, at baseline, 6 months, and 1 year post-surgery.

Also incorporates neuroimaging data to simulate volumes of tissue activation and relate stimulation parameters to outcomes.

In short, CHILD-DBS is a rich, structured platform for studying the real-world impact of DBS in young people, especially when used off-label (as is the case for centromedian nucleus DBS in epilepsy).

Prospective observational cohort studies

Mithani et al. analyzed data from the prospective CHILD-DBS (Child & Youth Comprehensive Longitudinal Database for Deep Brain Stimulation) to examine the impact of CM-DBS on patient- and caregiver-reported outcomes.

Twenty-two children and youth underwent bilateral CM-DBS. Caregiver-child dyads completed surveys related to seizure frequency, seizure severity, quality of life, and school attendance at baseline, 6 months, and 1 year postsurgery. Simulated volumes of tissue activation were analyzed to identify optimal stimulation targets associated with treatment outcome.

Of 22 children, 10 experienced ≥50% reduction in seizure frequency (mean reduction = 66.7 ± 17.3%), one exhibited a modest benefit (37.5% reduction), and the remaining 11 experienced no change. The majority (73% of patients) exhibited a clinically important reduction in seizure severity, including six children who did not demonstrate any change in seizure frequency. Only those who experienced a reduction in seizure frequency demonstrated significant improvements in general health and overall quality of life. Furthermore, we observed an increase in school attendance across participants 1 year after CM-DBS.

CM-DBS can lead to a reduction in seizure burden concurrent with improvements in quality of life and relevant functional outcomes in children with DRE. These findings further our understanding of the impact of CM-DBS on meaningful outcomes for children and caregivers 1).

1)
Mithani K, Niazi F, Suresh H, Alrumayyan Y, Rayco ER, Ochi A, Otsubo H, Kerr E, Breitbart S, LeBlanc-Millar A, Gadgil N, Raskin JS, Weil AG, Hadjinicolaou A, Iorio-Morin C, Weiss S, Jain P, Sham L, Donner E, Fasano A, Gorodetsky C, Ibrahim GM. Deep brain stimulation of the centromedian nucleus for drug-resistant epilepsy in children: Quality-of-life and functional outcomes from the CHILD-DBS registry. Epilepsia. 2025 Apr 1. doi: 10.1111/epi.18393. Epub ahead of print. PMID: 40167366.